Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Sharmin on June 26, 2008, 01:43:54 AM

Title: Message from my son:
Post by: Sharmin on June 26, 2008, 01:43:54 AM: Hi, I'm 9 1/2 years old and I have thalassemia major. I have an auto-antibody,but otherwise I am fine. Because of this, I have to go in for transfusions more often, and I take pills and to keep my iron down and to keep my hemoglobin high. I live a healthy and fun life. I got the academic award for my school, and I am very athletic, so thalassemia obviously doesn't affect that kind of stuff. I play ice hockey, and my coaches have never even guessed that I have it. The only difference between me and my classmates is that I miss a bit more school overall and I have desferal for 10 hours a night(which doesn't affect anything thats going on in my life).

Thanks for all the good advice you guys gave to our family to help me stay healthy. I hope we can help you back, and I really hope there is a cure for thalassemia.

sincerely,
Sharmin's son :thumbsup
Title: Re: Message from my son:
Post by: Sharmin on June 26, 2008, 01:47:59 AM: Hi friends,

The above message is from my son. He wanted to write something encouraging on the board for parents of young children - and to motivate thal patients. He wants people to know that thalassemia doesn't have to get in the way of living a happy and successful life - he doesn't seem to mind having it at all.

Cheers,
Sharmin
Title: Re: Message from my son:
Post by: nice friend on June 26, 2008, 02:47:22 AM: hi little star :
.. i m surpised that he understood it in early age .... ...... :high5
... how r u ??... have nice tripp buddy .. try to enjoy as much u can .. :clapcheerboy
i m waiting to hear once again when arrive to home .. keep post ur little n cute :clapcheergirl
comments.n dont hesitate to share anything u want share with us ...... take care :heehee
:yahoo :yahoo :clap :veil :crackup :hey :yay
bye
Title: Re: Message from my son:
Post by: Andy Battaglia on June 26, 2008, 04:20:44 AM: Have a great time at Disneyland! :yay

I've heard a lot about you but I don't know something. Which is your favorite hockey team?
Title: Re: Message from my son:
Post by: Zaini on June 26, 2008, 05:23:43 AM: Hello there son :hugfriend :hugfriend

Have a lot of fun in disneyland,and believe me with all efforts your mom is doing for you,you'll continue having fun all your life :bighug :bighug

We all love you. :kiss :kiss

Aunt Zaini.
Title: Re: Message from my son:
Post by: §ãJ¡Ð ساجد on June 26, 2008, 06:01:23 AM: Hi little one,

Good to see your high spirits. Keep it that way.

You are doing great and proving that Thals. can not only be normal but Super Normal :wink

Now; listen to what your parents say and you can be even better than the best :thumbsup
Title: Re: Message from my son:
Post by: Manal on June 26, 2008, 09:19:20 PM: One day i hope my son would write a post like yours, i am sooo proud of you :hugfriend. I love your challenging spirit . Truely you and your mum are an inspiration.

Welcome sweetie to the site :hugfriend :hugfriend :hugfriend

manal
Title: Re: Message from my son:
Post by: Sharmin on October 16, 2008, 12:15:27 AM: Hi guys, it's me again, Sharmin's son. I've gotten a lot better since last time I posted. My antibodies are gone because we have been treated with by a lot of new medications and doctors, thanks to Andy. Oh, and by the way, Andy, I'm sorry I couldn't answer earlier before, but my favorite hockey team is actually the Flames.
I started up my hockey season as well, and my first game is on Saturday.
Anyway, how are you guys all doing? I'm feeling awesome! Thalassemia doesn't affect my life in any bad way!
I'm pretty excited about getting online and writing a post to you guys again. I'll be sure to write more often from now on.
If you are worried about your child, well, actually they'll fit in with every one else. When I tell my teachers why I sometimes miss school, they are soooooooo suprised!

I'm sorry Sajid is gone.

Sincerely
Little A :high5 :thankyou
Title: Re: Message from my son:
Post by: Sharmin on October 16, 2008, 12:18:16 AM: Hi guys - here's another message from "Little A" my son, I guess our youngest thalpal. He is grateful for everyone's help here and wanted to thank you all and inspire parents of newly diagnosed thals. I wasn't allowed to look over his shoulder while he typed - but I think he did a pretty good job :wink He hopes to post more often in the future.

Love Sharmin
Title: Re: Message from my son:
Post by: Manal on October 16, 2008, 12:29:15 AM: Little A, i just love your post and you are most welcomed writing any time. Actually i want you to write more and more. You are an inspiration to me and my son. Don't imagine how your words gives me a lot of comfort when you say that our children will fit in. Though you are like my daughter in age but i guess i will start learning from you alot. I will appreciate if you from time to time share with us all your expierences and thoughts. Until then, lots of hugs and kisses to you

manal
Title: !
Post by: poo gill on October 16, 2008, 01:17:28 AM: Hi Armaan

I saw your post for the first time and man I am impressed. Way to go dude!. Your mum has promised that she will be visitng me in S'pore along with you all. I would love to have you all here. Keep posting. I am looking forward to introducing you to my son Prat. He is going to be 9 in Jan.

God bless.

Luv

Aunty Puja
Title: Re: Message from my son:
Post by: Andy Battaglia on October 16, 2008, 01:32:20 AM: Hi Little A,

I'm really happy to know that I've been able to help. You're a healthy kid and the antibody was the only problem. Now you're back to normal just in time for hockey season. :biggrin

Dr Vichinsky is a great guy and I'm really happy he is watching over you. I knew if anyone could help straighten things out, it would be him. I hope I can meet him again some day. He really wants you take all your supplements so you can have a good active life and lots of fun!

Thanks for the good advice for parents. Their kids will fit right in when given the chance and parents have to have faith.

Take care and I hope we keep hearing from you.

Big A
Title: Re: Message from my son:
Post by: poo gill on October 16, 2008, 01:45:29 AM: Andy I like the sound of it - Big A and Little A.
Title: Re: Message from my son:
Post by: Maako on October 16, 2008, 01:59:29 AM: Hi Little A, Wow, your posts amazed me... so young and yet you seem to understand thal so well... am really impressed...you should post more often... i would love to read it all..

take care and loving your attitude.. congratulations on your achievements, your mom told us all about it :biggrin and we are all very proud of you :congrats

lots of love
Title: Re: Message from my son:
Post by: Zaini on October 16, 2008, 02:35:14 AM: Hi sweetheart, :hugfriend

It's so good to see you posting,i hope we'd meet someday ,love always.

Aunt Zaini.
Title: Re: Message from my son:
Post by: Sharmin on October 16, 2008, 03:22:01 AM: Thank you for your responses everyone:)
He sat up on his bed waiting to see everyone's responses before falling asleep. He went to bed with a big smile on his face.
He adores all of you guys. He loved 'big A' and 'little A'.

Sharmin :heartpink
Title: Re: Message from my son:
Post by: Annie on October 16, 2008, 10:30:58 AM: Hello Lilttle baby.
it's very nice to see your post.welcome..
you are an ideal to other...
like your positive attitude, :clap keep it up.
and all the very best for hockey.
God bless you son
take care :clap :clap
Title: Re: Message from my son:
Post by: nice friend on October 16, 2008, 11:36:49 AM: Hey Little A ,
its nice to hear from you buddy ... i was waiting for this moment ...
i hope you will contineu it on regular basis ... you are our youngest thal pal ..
sorry for replying too late buddy . but it was due to my complusion ...
i hope you will enjoy your stay over the site ....Nice To meet Ya buddy ..
i never used ya instead of you before ... its for you buddy ..
i m confused between to welcome cards soo sending you both ..
(http://www.zwani.com/graphics/welcome/images/001.gif)
(http://ct2.pimp-my-profile.com/graphics/wset11/welcome.gif)

Best Regards
Take Care
Umair
Title: Re: Message from my son:
Post by: Narendra on October 16, 2008, 07:41:27 PM: Little A,

Amazing my friend. I feel that your positive attitude with make you a very good person. Also, keep up with your extreme will power and stay in good shape. You have won a battle, but you have to win the war. Your mom has tirelessly been trying to find out the best treatment for you and even though it might have been difficult for you, I am glad you have co-operated and won the battle.

I would say as you have mentioned never consider or allow yourself to be considered having Thal as a big issue. Mind set makes everything and if you build up on that you will be a successful young men like many of my friends who are successful thals who are doctors, engineers, lawyers, doing PhDs and all this is because of their being faithful to their management of thal.

Way to go and I would say - Give special hugs to your mom for what she has done for you and we expect to hear more from you - especially on how your games are going on.
Title: Re: Message from my son:
Post by: Canadian_Family on October 17, 2008, 07:41:25 PM: Hi Little A,

So you like 'Calgary Flames', my favourite is the 'Toronto Maple Leaf'. I know this hockey season will be awsome and infact the flames are playing the maple leaf on Novemeber 11, 2008 at the Pengrowth Saddledome, Calgary.

ARE YOU GAME!!! :)
Title: Re: Message from my son:
Post by: Sharmin on October 18, 2008, 03:48:36 AM: Thank you so much for your warm messages - my son loves reading them! He will write again soon.

Wishing everyone all the best,

Sharmin
Title: Re: Message from my son:
Post by: maryo0m on October 27, 2008, 11:45:23 AM: Hi there , thats a great post :clap

hope some day you turn out to be a famous hockey player
Title: Re: Message from my son:
Post by: Andy Battaglia on November 03, 2008, 12:32:32 AM: Hey little A,

Your mom showed me some pics of you in June and September and I have to say WOW! You are looking great! What a difference in just a few months time. And just in time for hockey season. :biggrin
Title: Re: Message from my son:
Post by: Sharmin on November 03, 2008, 03:57:32 AM: Andy,

Little A read your message - I actually let him compare the two pictures as well - he had the same reaction. The change in him is unbelievable, it looks as though they are pictures of two different boys.

During the time that he had antibody he was on very frequent transfusions and steroids. When I look at pictures from the spring I can see the coppery, grayish tone in his skin and the puffy face from prednisone. After rituximab and the new combination chelation therapy - he is almost off of the prednisone. Now his face is its normal shape and his skin is pinky - he looks like he did before this whole antibody situation.

Also, thanks to the supplements you recommended - the B vitamins, minerals, vitamin e and carao - he has tons of energy and he is doing great at hockey and track and field. Other parents have remarked that little A has such great speed and energy in hockey - they are wondering what we are feeding him:):) His dad is beaming with pride after each game.

Andy, thank you from the bottom of our hearts for giving us our son back :ty :ty :ty :ty

Sharmin
Title: Re: Message from my son:
Post by: avasmom on November 04, 2008, 06:35:37 PM: :biggrin :biggrin

hi lil A, you are so encouraging to me as a new parent of a baby with thal major, i pray that my daughter is as upbeat and helpful to others as u are!!u made me feel like my daughter wont have issues in fitting in and living a normal life. and u just seem so bright, god bless u and im so glad that the antibodies are gone
Title: Re: Message from my son:
Post by: sahil on November 05, 2008, 01:17:26 AM: Its so good to read a 10 year old posting such posts. Truly amazing man!! I am trying to recall what did I do when I was a 10 year old :smiley

All the Best with your hockey mate!!

\peace/
Title: Re: Message from my son:
Post by: Sharmin on November 05, 2008, 01:41:01 AM: Thank you for your comments :)
You are all so sweet :hugfriend :hugfriend

Sharmin
Title: Re: Message from my son:
Post by: Bostonian_04 on November 05, 2008, 07:51:12 PM: Sharmin,
Your son is an inspiration for all new parents and I salute you and your husband for all the hard work. I hope to learn from you and see my daughter grow up to be like Little A.
Title: Re: Message from my son:
Post by: Sharmin on November 13, 2008, 12:08:37 AM: :ty :ty :ty :ty :ty :ty :ty

Sharmin
Title: Re: Message from my son:
Post by: Sharmin on November 13, 2008, 05:35:02 PM: Canadian Family,

Little A was wondering you saw the Flames 4 - 3 victory over the Leafs on Nov 11th?? :wink

Hope things are going well with your family:)

Sharmin
Title: Re: Message from my son:
Post by: Canadian_Family on November 13, 2008, 09:01:32 PM: Hi Little A,

I missed that game, well congratulations to Flames. Seriuosly, Maple leaf will do better next time :wink

Take Care.
Title: Re: Message from my son:
Post by: aryaka on December 09, 2008, 02:18:57 AM: Hi little A,
Nice to know you!
Some day you vist to VietNam, I'll be waiting and warming welcome, and so is my son!!!
With love!
Title: Re: Message from my son:
Post by: Sharmin on December 09, 2008, 02:36:54 AM: Thank you kindly for your invitation Aryaka - Little A would love to visit you and your son some day :)
All the best to your adorable little boy :hugfriend

Sharmin and Little A
Title: Re: Message from my son:
Post by: aryaka on December 09, 2008, 07:52:42 AM: Hi little A,
My son don't know ice hockey because there has no snow in VietNam ;D. But he's intersted in football, hope you can teach him one day.
How's school going? Tell me and I'll tell to my son before asleep, the story of friend...and tell him that he has many friend side by side.
With love
Title: Re: Message from my son:
Post by: marziya on December 11, 2008, 02:01:49 PM: Quote from: sharmin on June 26, 2008, 01:43:54 AM
Hi, I'm 9 1/2 years old and I have thalassemia major. I have an auto-antibody,but otherwise I am fine. Because of this, I have to go in for transfusions more often, and I take pills and to keep my iron down and to keep my hemoglobin high. I live a healthy and fun life. I got the academic award for my school, and I am very athletic, so thalassemia obviously doesn't affect that kind of stuff. I play ice hockey, and my coaches have never even guessed that I have it. The only difference between me and my classmates is that I miss a bit more school overall and I have desferal for 10 hours a night(which doesn't affect anything thats going on in my life).

Thanks for all the good advice you guys gave to our family to help me stay healthy. I hope we can help you back, and I really hope there is a cure for thalassemia.

sincerely,
Sharmin's son :thumbsup

Hey Thats a very encouraging message from your son Sharmin.Keep it up dear.Our prayers are with him.

Take care
Title: Re: Message from my son:
Post by: Sharmin on December 11, 2008, 04:17:36 PM: Thank you Aryaka - I will have Little A post again very soon. He does ask to read responses to his posts regularly, but with school and all of his activities he sometimes doesn't have time to post (he likes to take time choosing the perfect smilies for his posts :) ). He seems to be doing very well, he will be playing the trombone in a school Christmas concert this afternoon so he is very excited. He also has a hockey tournament this weekend. School is going very well and he is excited about Christmas holidays. Please give his greetings to your son - Little A would love to have him for a friend :high5.

VenusMarz - Thank you kindly for your wishes - I think that little A is doing much better, but this would not be possible without the love and support we get on this site. The advice I have gotten here is responsible for any progress that little A has made. I wish your daughter all the best, my prayers are with her and your family. I hope that your daughter is getting good vitamin supplements. Please see the nutrition and supplements that are recommended on this site, they have made all the difference for Little A. If you need any guidance please let me know and I will try to help you out :hugfriend :hugfriend

Sharmin
Title: Ten years since Little A was diagnosed with Thalassemia Major
Post by: Sharmin on December 11, 2008, 04:27:06 PM: It has been 10 years since Little A was diagnosed with thalassemia major today. Although we have had some difficult days, mostly
because of the antibodies, things have been much better than I could have imagined. What these children are missing (red blood cells) has been gifted to them in so many other ways - compassion, generosity, wisdom, understanding, strength, courage, and patience. We are so blessed to have these children in our lives. I am very proud of my thal son and all of my thal friends on this site.

Sharmin
Title: Re: Message from my son:
Post by: Manal on December 12, 2008, 02:08:12 AM: You Sharmin and little A are an inspiration to all of us. May the coming years be the time when we celebrate their cure. :hugfriend :hugfriend :hugfriend

manal
Title: Re: Message from my son:
Post by: Sharmin on December 12, 2008, 02:14:41 AM: Thank you kindly Manal, I find myself being inspired by you, Zaini and all of my other friends here - I think we need a group hug :grouphug

Sharmin
Title: Re: Message from my son:
Post by: Zaini on December 12, 2008, 09:48:00 AM: Hey i am blushing :blush

The fact is,this site has totally changed my life,my approach towards thalassemia,now when ever i look at my daughter,i see an active healthy child,no thal around her ,i don't think she scn not achieve anything if she sets her mind.

And that' all because of you all guys :grouphug

Zaini.
Title: Re: Message from my son:
Post by: Manal on December 12, 2008, 06:06:28 PM: :clap :clap :clap :clap :clap :grouphug :grouphug :grouphug :grouphug
Title: Little A's Message to families of Newly diagnosed thals
Post by: Sharmin on December 13, 2008, 05:03:14 AM: Hi thalpals,

It is past little A's bedtime but he has a message for parents of newly diagnosed thals. He wants to say that parents should not worry about their thal kids because life with thalassemia can be great. Transfusions and chelation are not the torture that they sound like. Little A wants to remind everyone to take care of themselves so that they can be stronger to enjoy their lives, he wants everyone to participate fully in life so that life will be more fun:) He is reminding everyone to transfuse, chelate and take your supplements!!!!!!!!!!!!!!!!!!!

Everyone has challenges, and if we can teach our kids to overcome the challenges that come with thalassemia with courage and grace - all other challenges that they face in life will be a peace of cake:) I think that little A handles thalassemia better than I do and I am still learning from him. I pray that he grows up with this attitude and that he becomes a happy and healthy man. We as a family are still learning - but we know what our goal is. Have faith in yourselves moms and dads - and have faith in your little ones - Life can be great even with thal. Maybe thal will teach us to live richer more meaningful lives.

Take care everyone,

Sharmin and Little A
Title: Re: Message from my son:
Post by: Zaini on December 13, 2008, 11:45:19 AM: Little A and Sharmin,

You both are very right,life can be fun even with Thalassemia,and we can learn a lot from kids,they are so resilient ,my daughter never complains about thal anymore,i just pray that they grow up with the same attitude.

Love you,

Zaini.
Title: Re: Message from my son:
Post by: Manal on December 13, 2008, 12:27:49 PM: Dear Sharmin and little A

Thanks a lot for your message, we all need this kind of spirit from time to time to remind us of being strong and to recharge ourselves again for the on going challanges. Thank you my freind

manal
Title: Re: Message from my son:
Post by: nice friend on December 13, 2008, 02:38:55 PM: Hi Little A ,
i like to read your posts , i like the positiveness in your posts , i like and appreciate the approach of Little A to handle the life , thats wat we all need to adopt ... :thumbs for Little A , keep it buddy you have dare and strangth to live on your own rules .... May God Bless You and your Family With Life full of Life ... keep the good work up buddy ...

Best Regards
Take Care
Umair
Title: Re: Message from my son:
Post by: Sharmin on December 13, 2008, 04:47:16 PM: Thank you guys - Little A and I are learning so much from all of you. I have uploaded pictures of him playing in his hockey tournament this morning in the members gallery. He is number 6. He had two scoring chances this morning, but didn't get the puck in the net - next game!

Sharmin
Title: Re: Message from my son:
Post by: nice friend on December 13, 2008, 10:29:55 PM: Sharmin ,
its great to seee him in action , i hope he will b a star performer to his team's side in soon future ... convey my many many Best Regards and best wishes to him ... :cheer and tell him i m a supporter of him :cheer :cheer :yay :cheer

:cheer :yahoo :veil :happydance :goodluck :clapcheerboy :cheer
:cheer :yahoo :veil :happydance :goodluck :clapcheerboy :cheer
:cheer :yahoo :veil :happydance :goodluck :clapcheerboy :cheer
:cheer :yahoo :veil :happydance :goodluck :clapcheerboy :cheer
:cheer :yahoo :veil :happydance :goodluck :clapcheerboy :cheer

Take Care
Umair
Title: Re: Message from my son:
Post by: Sharmin on December 14, 2008, 06:39:24 PM: Hi Umair,

Little A scored the only goal in the game this morning just for uncle Umair :) Thank you for your encouragement and being such a great role model. With people like you leading the way these little ones have such an advantage - your encouragement means the world to the young thals.
Title: Re: Message from my son:
Post by: cherieann on December 14, 2008, 07:29:12 PM: To Sharmin's son
:hithere I am so excited to have read your post and can't help but think that you are awesome!
I love the way that you are getting on with life and not letting Thalassaemia stop what you want to do.
You continue to enjoy life and show us oldies how to be positive.
Have a great christmas.
Arohanui (means lots of love)
Cherieann :hugfriend
Title: Re: Message from my son:
Post by: Andy Battaglia on December 14, 2008, 07:49:52 PM: Great going little A! :high5
Title: Re: Message from my son:
Post by: Sharmin on December 14, 2008, 07:58:46 PM: Arohanui to you too Cherieann,

Thank you for your compliments Cherieann - we are just learning from grown up thals like you:)
You all have just taught us that thals can do anything that they put their minds to - we gave it a try with Little A - and he is
doing exactly that and having fun doing it. Thals need to fill their lives with what they love, just as you are doing. Given a chance - given a hockey stick and a pair of skates any thal can put the puck in the net.

As you have done for us, I am hoping to show other parents of thal children that their children can do anything. When they ask what thals do and what they look like I want them to see Little A playing hockey - and when they ask how young thals feel about their lives I hope that Little As messages will reassure them.

Honestly, if genotype testing had been done for little A prior to transfusions and had he not developed antibodies - thalassemia would not have been any burden for us. My hope is that to encourage people to do the things that we have done right - sports, positive attitude etc. and also to take precautions that we did not know about that is what each of us needs to do for the younger thals. Having dealt with the antibodies - my hope is to have the simple monthly transfusion/chelation routine of thalassemia back because it really wasn't that bad at all.

Thanks again friends,

Sharmin
Title: Re: Message from my son:
Post by: Sharmin on December 14, 2008, 08:00:10 PM: Thanks Big A :hi5boys
Title: Re: Message from my son:
Post by: Manal on December 14, 2008, 11:59:09 PM: Little A, I am really sooooooo proud of you, way to gooooooo my dear little friend :hugfriend

:clap :clap :clap :clap :yahoo :yahoo :yahoo :yahoo :clap :clap :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup

manal
Title: Re: Message from my son:
Post by: Zaini on December 15, 2008, 03:15:12 AM: Here,Here :clapcheerboy :clapcheerboy

We have our very own star in the family :wink Zainab is also preparing for the sports in her school,she is really excited :biggrin and guess what,my little pumpkin will also be participating :biggrin i am dying to see him on the race track :biggrin he is only 3 and a half years old .I wish we'll see her on the first podium like last time. :pray

Zaini.
Title: Re: Message from my son:
Post by: Sharmin on December 15, 2008, 05:12:23 AM: Thank you Manal,
It's always great to share good news with you - as you have helped me up so many times when things felt like rock bottom:):) Please give Ahmad and Zeina a big hug for me:)

Thanks Zaini,
Of course our Zainab is going to be number 1 on the podium again! And, ohhhhhh I so would love to see little pumpkin running too:):) He is such a cutie :kiss. Please tell Zainab that auntie Sharmin is giving her a :hi5boys and a big :bighug

My prayers are always with your little ones - for them to be healthy and successful,

Sharmin
Title: Re: Message from my son:
Post by: nice friend on December 15, 2008, 10:37:03 AM: :yay :boogie :veil :clap :love :goodluck :party :happydance :peace :yay
:yay :boogie :high5 :thumbs :clapcheerboy :thumbup :heehee :yay
That the way to go Lil Champs ( Zainab , Ahmed & Little A)
:yay :boogie :veil :clap :love :goodluck :party :happydance :peace :yay
:yay :boogie :high5 :thumbs :clapcheerboy :thumbup :heehee :yay
Title: Re: Message from my son:
Post by: jade on December 15, 2008, 02:40:12 PM: HI Little A

Keep it up! :thumbsup. you make all of us along with your mama very very proud. :bighug

Sharmin

You have a great treasure.

Take care
Jade
Title: Re: Message from my son:
Post by: Manal on December 15, 2008, 05:58:25 PM: You are welcomed Sharmin :hugfriend

Umair, thanks a lot for your continous support, you are an isnspiration and role model for prsistence for these young childdren :hugfriend

manal
Title: Re: Message from my son:
Post by: nice friend on December 15, 2008, 09:40:56 PM: :urwelcome :urwelcome :urwelcome
:urwelcome Manal :urwelcome
:urwelcome :urwelcome :urwelcome
Title: Re: Message from my son:
Post by: Zaini on December 18, 2008, 09:43:51 AM: Thanks a lot Umair and Sharmin :hugfriend

Zaini.
Title: Re: Message from my son:
Post by: nice friend on December 20, 2008, 12:02:08 AM: :urwelcome Zaini Sis .....
Title: Re: Message from my son:
Post by: diskjockey on December 31, 2008, 09:46:47 PM: sorry guys but i have nothing to say like you guys because i didnt enjoyed my life like you guys partly because of arthritis.i remember i use to watch my class fellows playing football and wonder one day i would play like them.but unfortunately the day didnt came but i am hopeful that that day would come
Title: Re: Message from my son:
Post by: Sharmin on December 31, 2008, 09:49:43 PM: I hope that you are able to enjoy your life and that you are pain free. Arthritis can be devastating I am sorry that you have had to suffer from it. I hope that you will be able to live the rest of your life participating rather than watching from the sidelines. There are so many ways that you can participate in life. Best of luck to you.

Sharmin
Title: Re: Message from my son:
Post by: cherieann on January 01, 2009, 12:51:21 PM: Quote from: diskjockey on December 31, 2008, 09:46:47 PM
sorry guys but i have nothing to say like you guys because i didnt enjoyed my life like you guys partly because of arthritis.i remember i use to watch my class fellows playing football and wonder one day i would play like them.but unfortunately the day didnt came but i am hopeful that that day would come

We may not always say it but some of us had to deal with similiar issues as you.
I can understand what you are talking about only mine is both wrists and hands. Its not arthritis. The specialist says it may be cardiocampothy. It has limited me alot so I adjust so that it doesn't stop me from being me.
You will find your niche in life where you will have fond memories like us no matter what your body is doing.
Thats what I have found for me.
Title: Re: Message from my son:
Post by: nice friend on January 01, 2009, 12:58:47 PM: Hey Ahmed ,
why r u sad buddy , look at me , i didn't enjoy the age wat's called the golden age the age when a boy could b on his peak of everything , i was suffering in that age of 15-20 , i was suffering to various kind of complications of thalassemia here i m gonna mention that all sequence wise ,

1 ) osteoprosis pains
no local doctor could diagnose wat was on with me .... they kept giving me painkiller for 3 years , not contineusly but when-ever i visited any local doctor he prescriipted me painkiller ... one orthopedic who was not a thals ortho but he were realy wise for me .. he is a friend of one of my uncle he gave me fosamax which was the first treatment for osteoprosis in that time ...

2 ) Stomach disturbance and ulcer in intestine ,
bcoze of too much painkillers and for taking painkillers for a long time i catch this complication , it was the worst pain i ever got ,,, i cant express in words , it was the first and last pain that drive me crazy to say anything , i was unable to sleep and i didn't sleep contineusly 2 - 3 nights several time bcoze of i didn't sleep even i took sleeping pills at that time. ... it was the worst thing i ever being through ...

3 ) un-diagnosed diabetes ,
a local doctor told me to eat the traditional heavy food ( desi khorakan hahah .. chori tay ghee wali rotian , doodh jalibi etc...etc .... ) ... after taking all these things , i got the symptoms of diabetes ( till that time i dont knew abt the symptoms of diabates ) when i told wat i being through he prescripted me almost 20 times for BSL tests ( Blood Sugar Level) ... but even BSL Random and fasting both were normal in the test , but diabetes was damaging my senses and my self ,as i slowly loosing my memory , my eyes , my sense of hearing , understanding even sometime i were unale to recognize my close relatives,........ at least a dctor told my parents to take me to lahore to Dr.javaria manan ... to that day i m recovering day by day and now i m able to play footbal ( penalty kicks only :D ) with my cousin and cricket matches after matches to my cousins ...

in 3rd point i mentioned all wat happened to me soo no 4th point hehehhee,,,

Best regards
Take Care and stay happy dont loose the courage bcoze its the life ....
Umair
Title: Re: Message from my son:
Post by: Zaini on January 01, 2009, 05:03:32 PM: Ahmed,

I don't know what's your ferritin level? how frequently do you transfuse? and if you are taking any kind of supplements? do try to share all this information with us,taking supplements can help you a lot,as well as lowering your ferritin.I know it must be hard being a teenager and not having fun,but we are here for you,we'll help you go through it,be here with us :) .

Zaini.
Title: Re: Message from my son:
Post by: Sharmin on January 01, 2009, 08:29:53 PM: Dear Ahmad,

As you can see many of the happy stories that you have read about here are not about how people have had it easy and how they have coasted through life. It is also not about people who have always been happy regardless of their condition. Most of the stories involve numerous obstacles and complications that have been overcome to find this happiness and peace. Many thals have faced limitations, pain, and depression at some point in their life and we are happy to report that many of them have developed healthier and happier attitudes toward life.

We hope that you will overcome your hurdles as well, we hope that we can help you achieve physical and emotional well being because we KNOW that it can be done. I cannot say that it will be easy but it can happen if you let it.

I wish you the best Ahmad, please stay connected to us and the wonderful and inspirational people on this site. We cannot change everything but we can help you heal. Remember, it is not what you have it is what you make of it - regardless of your situation. You sound like you are trouper and that you have a lot of courage, now you need to use this courage to bring about success, happiness and change. In your 'boxing match life' - you need to block some punches and you need to take some swings at this disease.

Sharmin
Title: Re: Message from my son:
Post by: cherieann on January 09, 2009, 07:47:12 AM: :agree :exactly
We are hear to lend an ear or an idea if you want. :dunno
Title: Re: Message from my son:
Post by: nice friend on January 11, 2009, 09:03:26 AM: Quote from: cherieann on January 09, 2009, 07:47:12 AM
:agree :exactly
We are hear to lend an ear or an idea if you want. :dunno
yeah :exactly we all are here for each other ..
Title: New: Message from my son:
Post by: Sharmin on April 10, 2011, 03:01:28 AM: Hey guys , it's little A here. Sorry I haven't been on in a while, i have been caught up with school work and hockey. My life has been awesome since i last posted. I am on exjade now, so I don't need desferal or a needle every day and all I have to do is drink a glass of juice. I sometimes read your guy's posts and you all inspire me to thrive towards my full potential. As I have said before, my life is basically normal in every way form playing hockey, to owning a dog, to getting in trouble because I talked in class. I love golf, reading and hockey. I love hockey. Anyways, you guys do so much for your kids, just like my mom does for me. Stay healthy
From your bro,
Little A
LOL :-) :happydance

P.S. GO FLAMES
Title: Re: Message from my son:
Post by: Sharmin on April 10, 2011, 03:03:23 AM: Little A wanted to write a new post for all of you. He is now 12 1/2 years old and in 7th grade.

Love,

Sharmin
Title: Re: Message from my son:
Post by: Madhavi on April 10, 2011, 06:00:31 AM: ....goosebumps...

Share that maternal pride,Sharmin...!

You must be so proud of him....we can so feel the love you guys share...

God bless you both....

Madhavi
Title: Re: Message from my son:
Post by: baal on April 10, 2011, 06:11:37 AM: hi little A!

i want to wish u all the best ...

enjoy ur live and the warm love from ur familie...

u will see every day there will be come is it worth

to live for. panos
Title: Re: Message from my son:
Post by: Sharmin on April 10, 2011, 04:55:12 PM: Madhavi and Baal,

Thank you so much. You have no idea how inspired Little A is from the responses he gets from you all. I hope all of the little ones will be communicating with us and one another on the board soon. Hopefully they will keep each other positive and on track :wink

much love,

Sharmin
Title: Re: Message from my son:
Post by: maha on April 11, 2011, 05:56:01 AM: Hi Little A

Our Lil A soon gonna be a teen A. Its good to read from you again. May you continue to excel in both academics and of course hockey.

take care and stay happy
maha
Title: Re: Message from my son:
Post by: Zaini on April 11, 2011, 10:06:57 AM: Hey Little buddy, you are not so little anymore are ya :wink it was nice hearing from you,keep enjoying the life :) and keep posting.

Aunt Zaini. :hugfriend
Title: Re: Message from my son:
Post by: Sharmin on April 11, 2011, 02:47:59 PM: Thank you Maha and Zaini,

Your messages mean so much to lil A. He sends his best to all of you and the other lil ones on this site.

Sharmin :hugfriend :hugfriend
Title: Re: Message from my son:
Post by: Andy Battaglia on April 11, 2011, 03:09:56 PM: Hi Little A,

Good to hear from you again. It must be great to not have to poke yourself with a needle all the time. Every time I hear about a new treatment being developed, I think about how guys like you will have things a bit easier in the coming years, so you can concentrate on the important things in life, like hockey. :biggrin Go Sabres! Hehe. I doubt they'll win a round.

Big A
Title: Re: Message from my son:
Post by: Sharmin on April 11, 2011, 03:33:52 PM: Thanks Andy,

I can't wait to let him read these posts when he gets home from school. I hope that reading his posts help parents of younger children who wonder how their children will feel about thalassemia when they are a little older.

Best,

Sharmin
Title: Re: Message from my son:
Post by: nat on April 11, 2011, 05:23:08 PM: :hithere Little A,

Happy to hear you're happy...enjoying life & study!
You-playing hockey-are great, very encouraging other thal kids who loves sport. :cheer Keep on going!

Cheers,
Nat
Title: Re: Message from my son:
Post by: Sharmin on April 11, 2011, 05:52:28 PM: Thanks Nat :hugfriend

People such as yourself and your brother have lead the way for the young ones. Hopefully lil A will help the thals who are younger than he.

Sharmin
Title: Re: Message from my son:
Post by: aus on April 21, 2011, 01:53:20 AM: My son Jia developed the Kell group antibody last year and now has a problem getting suitable donour. I heard from the hospital that there are only a couple of donours with the same blood type and such antibody in Perth. He is recommended not to do strenuous sports so as not to incur more blood transfusion than what is already needed. Just wondering what everyone's view on this matter.
Title: Re: Message from my son:
Post by: CatherineM on August 26, 2011, 05:31:39 AM: Hi Aus

Just wondering whether you found out whether this (Kell group antibody) is available at any other Australia's blood banks maybe Adelaide. I know this is a long way Perth maybe it would offer you some comfort to know there were more than a couple of donours available. Surely we are able to ship blood between centre is needed.

Regards
Catherine (Melbourne)