16 months old

Hi all
I speak on behalf of my daughter who is 16 months old. She has been diagnosed as a thal major when she was 7 months. I as a father find it difficult to come to terms with the blood disorder my daughter has. I take her for transfussions every 3 weeks and fortunately her iron levels are still low. We have not yet started the exjade.

Please give me hope and advise when will there be a cure like gene therapy available. 

I am however very glad to come across this website and to find so many people out there in the world who care.

Great website, please keep it up

Regards
Mohammed
South africa

Hi Mohammed,

Welcome to the forum! This is the best place for support & info on thal. U will find many people he who r very educated and have experienced what u r going through. I have a 20 month old thal major boy and another thal major baby on the way. 

I know how it is to be concerned about what's to come.  I have learned a lot through the parents and patients on this site and instead of just worrying and questioning my babys disorder, I just enjoy what he is. We live every moment and although at times things overwhelming, for the most part life is normal. He's walking, talking and playing like any other child. It could be so much worse & its not. I know mine r still young but you will see from most patients on this site that life is challenging as they grow up, but treatments and chelation are just improving.  Life is much easier for thals than it used to be.

I don't know if the cures that are available at this time are an option for our family but they may be options for u. Other members can give u more details on these and if u search the forum u will find lots of discussions related to this.

Other than that, try to remember that your little one needs u to be strong and  positive so they never feel like they are different. I know its hard, but coming to terms and treating her normally are the keys to her success. She  will show u that her thal will never stop her from doing what every normal child does and more.
 

Hi mohammad.
                   I have joined this site little before u. I have a 16 months old daughter too and I was as afraid as u. But after joining this i have come to know that there are many people who are living normally with thalassemia major. So Don't worry and keep ur child normal.

Mohammed,

Gene therapy as an available cure is still years away. Currently the only cure is bone marrow transplant (BMT). Success rates have climbed with BMT, with a higher than 90% success rate in many of the BMT centers in the west. However, a matching donor is needed.

Treatment for thalassemia has improved tremendously in the past two decades. It is no longer a death sentence, but has become a manageable chronic condition. Please learn as much as you can from our site about managing the care of a thal in today's world.

I realize that it is hard to accept this reality, but for your child's sake, you cannot dwell on this. Your job is to be the best father you can be to your daughter and fully accept everything about her, including this genetic disorder. One thing I learned from observing the eminent Dr Eliot Vichinsky, one of the world's leading thalassemia specialists is that parents often are so absorbed in what is wrong with their child and overcoming it, that they forget some of the simple things about being a parent. Please make sure your bond with your child is strong and that she gets all the special love you have to give. This is just as important as any doctor or treatment you can find.

They have said it well. There's nothing I want to add more. Well, one thing. Your daughter has thalassemia and thalassemia has certainly not your daughter. We must annoy it and not the other way round. It has also brought me good things; knowing the people of this forums, getting post from them, going on trips and eventually getting treatment together. Which is more fun. And yes, I have also found good friends who had never heard of it before. I am sure others can better pronounced it than me. I do not say that everything is fun, but you can always share the not so fun things with your friends and receiving advice. I hope it helps a bit.

 

Warmest wishes,
Dori
Not thal but pyruvate kinase deficiency (more rare). Same treatment though.

Hi, Mohd, we met in Antalya. Nice to meet you here!

i can totally understand what you are going through.my son was diagnosed when he was 4 mnths old.we have since had a unrelated cord blood transplant in taiwan,are still in the hospital due for dicharge soon.it is not difficult to get a cord blood match as a 5/6 or 4/6 also works .dr.jaing has a success rate of 88.6%and has treated more than 85 thals.give it a thought
good wishes
aabha
 

Hi All

I need some advise. My Daughter has been receiving blood transfusions for a year now and the time has come to reduce the iron levels in her body. We were given the option of the Desferal or Exjade. We opted for the Exjade but this little girl refuses to drink the Exjade with Water or Juice. Is there any other way of consuming the Exjade.

A recent trial by Novartis showed that Exjade can be taken with many different types of food. You can see the entire report in the pdf file attached to the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,4051.0.html  The pdf can be magnified to a larger size for easier reading.

I would also suggest splitting the dose and taking half in morning and half in evening. This reduces the amount used at once, which should make it more palatable for the child. It also gives a true 24 hour chelation that once daily does not.

Thanks Andy. We really appreciate your time, efforts and your knowledge on Thal. Thanks again and our prayers are with you and your family