#ernietomsknockingoutwiskottaldrich

#ernietomsknockingoutwiskottaldrich Ernie’s journey started before he was born. His older brother was diagnosed a day after his first birthday and we had found out we were pregnant with Ernie the month before. It’s heartbreaking enough to be told your son would die without a transplant but to be told the baby you are carrying if a boy will have a 50% chance of having the condition is shattering. 17 weeks pregnant we found out we were having a boy and we then refused anymore tests as there would have been a risk to him and no matter what we would have continued with our pregnancy. Ernie was born at 39 weeks. The delivery was planned as Ernie wasn’t allowed any assistance and if he got stuck more and likely he wouldn’t of survived due to the condition and having internal bleeding. Ernie was rushed away once he was born for immediate testing and returned to us with needle pricks all over his hands and feet. Ernie had to remain in the hospital and the next day the doctor confirmed that Ernie had low platelets however, we had to wait for gene testing to confirm Ernie had Wiskott Aldrich Syndrome. This condition requires a Bone Marrow Transplant for survival. The symptoms that come along with the condition are * frequent and easy bleeding * frequent and easy bruising * petechiae * chronic infections * eczema (atopic dermatitis) * autoimmunity As Reg already had the condition we needed to care for him at GOSH and our two other boys at home, because of this we both had to give up our professions. Reg has now had his transplant and Ernie urgently requires his transplant as he has developed autoimmunity causing his body to attack his own blood cells. Ernie could spend up to 3 months in Great Ormond Street depending on how he reacts to his treatment. After that he will be isolated at home to make sure his immune system can develop. Before Ernie can be given the donor cells he will require chemotherapy to ensure his body is conditioned ready for the cells. We will be travelling back and forward to Great Ormond Street and we and may need to stay in hotels if Ernie becomes unwell and both want to stay with him. The donations will be able to ensure that one of us will always be with Ernie and cover the living and traveling costs while also ensuring our boys at home can be supported. We were so grateful for all the support we received when Reg was going through this transplant and we appreciate everything that everyone has done already. Please if you can donate it would give us the opportunity to concentrate on making sure our boys can knock out Wiskott Aldrich and go on to live beyond their teens. Thank you.