Discussion Forums > Thalassemia Major

Financial assistance for Thalassemia patients.

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Baron6:
Hello,

It is encouraging to hear that you are adopting a second thal major child.  How special it will be for the two girls to go through life with a sibling who can relate!!
I have already posted on the adopting thalassemia site and have gotten in touch with some others who have already adopted like you.

I have learned so much about Thalassemial in the last few weeks.  It is amazing to think that just a few short weeks ago I had never even heard of Thalassemia!!

I am not sure when our adoption will be final.
Our little girls paperwork is in court but there are some complicating factors that may or may not add to the timeline depending on the judge that reviews the case.
The courts are on break in Albania so we will not find out any more until maybe October.

I really feel this is a calling for our family,  I trust that God will work everything for good. 

This site has been a source of valuable information and encouragement.
 
Thanks for your message. 

Andy Battaglia:
I think it's wonderful that people with such good, caring and giving hearts are led to these thal children who need families. You will surely discover how special these children are and what a blessing has been brought into your lives.

Lyanne:
Hi welcome Baron! I'm so happy there's someone like you who would actually doesn't mind if the kid you're about to adopt has a thalassemia..... It is so nice of you to care for a child who would be needing more help than you could ever think...... All the best for you and and your new kid....... take care and Godspeed to you always....... :grin :bighug

Downtown:
Your hearts will be changed forever in going through with your adoption.
These are very special children who are sensitive to their illness and those
who love and care for them.  You will never regret the comfort and joy
you can contribute to their life by being there for them.

Often, as with people of all ages and various illnesses, the public is not
always understanding and sensitive to the emotional needs of these
special children.

We are a family of Italian-Albanian descent who had a child with major-Thal.
In answer to your question about financial assistance I would say check with
local resources in your State and local government.  We had found CAF in
New Jersey very helpful at the time - the administrative staff is about the
best you can find in the world.  Unfortunately, local chapters are limited
for support as they are comprixed of mostly volunteers - however, they
could benefit you as a support group.  Much will fall on your own shoulders
however in being aggressive in seeking out the best doctors and treatment,
as even after so many years many institutions do not properly treat Thal
patients - not that they don't want to - or that they don't care, but they
have little experience in this area - although they may have a textbook
knowledge of the illness.

I noticed you had a referral to Children's Memorial Hospital in Chicago, and
that was very good advice.  Children's there has a long standing record of
treatment and success with Thal patient's - our family member had received
excellent treatment there, however it was early on and not much was known
about Thal back then.   So your little child would have the benefit of all the
years and experience such a hospital has to offer.  I know it is not in your
backyard - but the treatment and results would be worth it I am sure.

It is possible there may be equal care and treatment at the University of
Michicago Hospital - I am not familiar with your area.  You may wish to
contact the chief of hematology at Children's in Chicago for a name of
any physician who is known for treating Thal patients in your area.  Don't
make the mistake of not going to a specialist - you will realize this after a
while.

Best wishes for you and your beautiful child.  Feel free to contact us at any
time for a private conversation or support.  God Bless!

Frank in Chicago
clusoe@comcast.net

Andy Battaglia:
Hi Frank and welcome to the group,

Thanks for your excellent advice about seeing a specialist. Thalassemia is a complex disorder and most doctors are not familiar enough to be able to design treatment programs unique to each patient, as a specialist will be able to do. I think all patients should see a specialist at least once per year. A comprehensive care program is very beneficial.

That is also an excellent point about parents needing to parents needing to be proactive about finding proper treatment. It is very important for parents to be fully involved and to also educate themselves about thal and the various requirements involved with treatment. Parental involvement is the reason older patients, who did not have current treatments available to them when they were young, are alive today. Today, we have so much information available via the internet, that parents and patients may often be aware of new developments in treatment before their doctors do. A proactive parent who brings new information to the attention of treating doctors can make a big difference in their children's lives.

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