Mom shares how Gorlin Goltz Syndrome has affected the lives of Reece and family
“How has gorlins affected our lives… My little man was diagnosed 3 years with a horrible disease. He has been fighting it every day since. Reece is a very strong child, a super hero, and he has a strength that none of us can understand. He has gone through more than any one should ever have to, especially a child.
The pain this child has to endure is not normal. And it’s just not fair. He has had more surgeries than I can even remember. His little jaw is so compromised they have now put cow bone in to try and strengthen it. And there is just no sign of these darn tumors stopping.
Reece had a very rough night last night. The pain is unreal yet all he says is “mom, I will be okay”. And that he is sorry. Why should he need to apologise. None of this is his fault.
My family is in turmoil. It has affected us like I cannot even begin to explain. I have become numb to so much. I just don’t feel. I am like a robot just going through the motions. And that is not right.
We have had to rely so heavily on others for help. That is not right. I have had to beg and plead for help. That is not right. I have had to beg Dr’s and nurses to listen to me . That is not right. I have had to pull my child out of hospital at crazy hours because the staff just don’t have a clue. I have had to move from hospital to hospital begging for someone to please take a minute and research what Reece has, to just understand what is truly going on. That is not right. But… I will carry on doing this because he is my baby boy and only deserves the best.
Slowly we will get there. I will get to a point where Reece does not need surgery every 3-6 months. Reece will be pain free. And I know you all have my back and you most definitely have Reece’s.
To all our supporters, Reece is going through hell right now. But soon he will bounce back in promise.” – via Facebook
About Reece Trumpelmann
After receiving a bump on his jaw while playing on a jumping castle, Reece was taken through to Steve Biko Hospital where he was X Rayed and tested extensively. Doctors discovered that he not only has Cancer, but Gorlin Goltz Syndrome, BCCNS – an extremely rare condition which is virtually unknown in South Africa.
After many months and hugely expensive genetic tests, it was established that Reece has the PTCH1 and Sonic Hedgehog Pathway ( SAFU) genes present, so gene therapy is not an option. Click here to learn more about Reece`s condition and ongoing therapy.