Xavier’s Battle for a Healthy Brain
Hi my name is Donna Leong and I live in Springfield Lakes. I am Xaviers Aunty on his mothers (Stephanie Short) side of the family. Stephanies brother Joseph is my husband.
I am wanting to raise funds for my beautiful little nephew Xavier as he is currently in hospital again following another brain surgery operation which has now led to him developing meningitis. His parents have used up all their work leave and his mum Stephanie has had to take leave without pay to care for Xavier full time whilst he is in hospital which has left his family with out half their income.
He then has many follow up appointments after his discharge (which could be weeks away) which is more time off work for his parents. I am hoping to raise funds to help ease the burden and all donations will go to his family to help pay for bills and any other financial support that they need to help Xavier.
Xaviers struggles started when he was born with Achondroplasia, a form of short – limbed dwarfism. As a secondary hurdle, Xavier also suffered from Hydrocephalus, a condition that creates fluid build-up in the skull and causes an enlarged head and severe headaches. This internal pressure has led to brain matter deterioration and as a result, Xavier is quite intellectually delayed. The beauty of the brain is that with the correct tools and enough time, the junior brain can develop new neurological pathways as soon as the brain is given the chance to develop. We are just waiting for that chance.
Xavier underwent four operations, as a 2 – 3 year old, to relieve the pressure and the final operation was to put a shunt in (a tube and valve that allows the flow of cerebral fluid out of the brain). This shunt worked well for a while but as Xavier slowly grew and he became mobile, this shunt was unknowingly and uncontrollably drawing too much fluid from his brain. As Xavier is 90% non-verbal (for his age of 5), there is uncertainty of how long his brain was trying to operate in a dry environment. It’s heart breaking to think about it. Imagine living with an intense headache every day of your life, but to you its normal so you soldier on. It got to the point where it became obvious to his parents. He was being physically sick then it progressed to fits/seizures. His Neurosurgical team informed his parents that the older shunt would need to be removed and a new type of shunt would need to be inserted. This operation seemed to have gone well for the first week however then he wouldn’t allow anyone to touch that side of his head; then the fevers and illness really kicked in. They admitted him to hospital and monitored him for a week all whilst he was going downhill. The team couldn’t open him up in case it wasn’t an infection and expose him to an infection, if that makes sense. His condition deteriorated to bouts of unconsciousness and was rushed into have the new shunt removed. He was found to have a Staphylococcal meningitis infection. They drilled another hole and have inserted an external shunt. This now requires manual draining of his cerebral fluid for the next two to six weeks or until the infection has completely cleared and here he will stay in the high dependency unit. Once the infection is cleared, the team will then insert a new shunt and we pray that the next one doesn’t get infected.
Xavier is nonverbal and still cannot do things like go to the toilet on his own, get dressed and most other things that 5 year olds do. He requires his Mum or Dad to assist and support him with all that he does. All of this has been going on now for such a long time it has had a huge impact on his family financially and emotionally, including his dad falling quite ill with a heart condition for several weeks last year and has left the family financially overdrawn and behind. Xavier also needs life tools and educational support. Xman and his family would very much appreciate your help. Your financial support will go a long way to help them keep it together.
As an Aunty and also speaking on behalf of all of Xaviers famiIy we are so sad and heartbroken to see Xavier struggling. He has endured so much in his life and is such a strong brave little boy. I cannot wait to see him back home feeling happy again with his amazing supportive parents and family.
I would love to invite all my family and friends to share this post with their family and friends. Any donations received will be so very much appreciated no matter how small.
Please all keep Xavier in your thoughts and prayers and thank you so much to everyone for reading and sharing.
- Silvia Ismailova