Hope for Xzavier
Donation protected
Hello, my name is Elizabeth, I am the mother of Xzavier. I am currently trying to raise funds for my sons physiotherapy, occupational therapy and speech therapy in Sydney’s ‘Therapy For Kids’ centre. It is extremely costly and he would benefit from it immensely. I want to give him the best fighting chance.
Xzavier is 2 years old and is he is classed as a ‘SWAN’ (Syndrome Without A Name). This means he has an undiagnosed genetic condition, it could take doctors and specialists years to find out his diagnosis. We are currently undergoing a full exome genetic sequence. The current, and albeit small understanding of what may be his diagnosis is "Microcephaly, Failure to thrive, Eczema, Global developmental delay, Strabismus, Plagiocephaly, High cholesterol, Absent seizures, Hearing loss, Hypotonia, Metopic Ridge, Sensory processing disorder, torticollis, laryngomalacia." He also has enlarged adenoids and will need his tonsils and adenoids removed, He is currently feeding through an NG tube, and soon to get a G tube.
Xzavier's story is a long one, so I'll do my best to keep it short. When he was 2 months old he began to have serious breathing difficulties, he would go blue around the lips and struggle to inhale, as he breathed in he would have what they call a stridor sound. At such a young age he was in and out of hospital so much that we were on first name basis with the ambulance crew and most of the people in the emergency department at RCH. Hollie (my daughter 3yrs old) saw her little brother struggle to breathe, paramedics come running into our house and putting him on oxygen then watched him being taken away in an ambulance. She would worry whether or not he was okay. It was so hard for her. Sometimes she wouldn't see her brother for a week at a time, as he would be in hospital. His condition grew so bad that at 6 months old they performed a supraglottoplasty, which is a surgical procedure to alter malformed structures of the upper larynx. It helped at first but then it started to get worse again and still is to this day he is awaiting more surgery for it.
Xzavier has had countless blood/urine/stool tests and helmet therapy. He’s had CT scans, MRI scans, skeletal scans, sleep studies and still undergoes most of those tests today. We are willing to try anything and everything. We have a standing frame to get the feeling of being upright so that he can hopefully build some muscle.
He has a few more surgeries coming up next year and continues to amaze not only me but also those around him with the perpetual smile on his face. He is so resilient; he truly takes my breath away with his undying strength and courage. Whenever he gets upset during a test, I play a video of Hollie singing and dancing and he instantly smiles and gets through what he has to. He adores his big sister.
At our last appointment, they gave me a life expectancy for Xzavier. Then they factored in all his problems, and it further shortens his life. Honestly, nothing prepared me for that appointment. For the first time I feel broken. I hope and pray with everything that I have, that he far exceeds everything they have said to me.
Basically, if he doesn't walk soon his life will be cut even shorter, especially with the combination of his respiratory issues. And if he doesn't start to put weight on, his body is going to fail him even sooner. He has managed to put on a little weight, but is still just flat lining in his weight, way under the percentile line. We have increased his food, in the hopes that he can handle them and hopefully gain weight, and he is showing little improvement. No matter what solids I try to feed him, and special additives I give, his body is unable to absorb the nutrients he needs. This is made harder as he doesn't really eat solids, it has to be purée.
As it turned out, genetics were the end of the road for us, along with many other ideas that doctors have had. I feel as if this therapy could really help my baby boy. I have been reading success stories of other parents and I hope more than anything that one day I will be able to share my success story, and give other parents the hope that I so desperately desire. Over 18 months of very expensive hospital bills, etc.. renders my possibility of affording the therapy on my own nearly impossible. I have gone over finances again and again, and although there is nothing more important to me right now than getting him this therapy, and it really kills me to say this, but I simply cannot afford it alone unfortunately I had to quit my job due to hospital appointments and issues with feeding tubes etc, and I am now his full-time carer, unable to seek employment.
It feels as if my little family are constantly at the hospital. My children don't get to do a lot of things that other kids do, Hollie has missed out on Xzaviers first Easter because we were in hospital. All she wanted to do was hunt for eggs with her bother and she couldn't. It breaks my heart that Xzaviers older sister can’t enjoy all the milestones most sibblings share with each other. We try in many ways to make up for the lost time we spend in hospital, but she has missed out on friends parties, play dates, and also some very important time with her little brother. My kids have been though so much already that if we can get Xzavier into this therapy we could lessen the appointments and we would be able to spend more quality time together as a family, and most importantly it was also give Xzavier more quality of life.
http://www.therapiesforkids.com.au/treatments/intensivetreatments/
Xzavier is 2 years old and is he is classed as a ‘SWAN’ (Syndrome Without A Name). This means he has an undiagnosed genetic condition, it could take doctors and specialists years to find out his diagnosis. We are currently undergoing a full exome genetic sequence. The current, and albeit small understanding of what may be his diagnosis is "Microcephaly, Failure to thrive, Eczema, Global developmental delay, Strabismus, Plagiocephaly, High cholesterol, Absent seizures, Hearing loss, Hypotonia, Metopic Ridge, Sensory processing disorder, torticollis, laryngomalacia." He also has enlarged adenoids and will need his tonsils and adenoids removed, He is currently feeding through an NG tube, and soon to get a G tube.
Xzavier's story is a long one, so I'll do my best to keep it short. When he was 2 months old he began to have serious breathing difficulties, he would go blue around the lips and struggle to inhale, as he breathed in he would have what they call a stridor sound. At such a young age he was in and out of hospital so much that we were on first name basis with the ambulance crew and most of the people in the emergency department at RCH. Hollie (my daughter 3yrs old) saw her little brother struggle to breathe, paramedics come running into our house and putting him on oxygen then watched him being taken away in an ambulance. She would worry whether or not he was okay. It was so hard for her. Sometimes she wouldn't see her brother for a week at a time, as he would be in hospital. His condition grew so bad that at 6 months old they performed a supraglottoplasty, which is a surgical procedure to alter malformed structures of the upper larynx. It helped at first but then it started to get worse again and still is to this day he is awaiting more surgery for it.
Xzavier has had countless blood/urine/stool tests and helmet therapy. He’s had CT scans, MRI scans, skeletal scans, sleep studies and still undergoes most of those tests today. We are willing to try anything and everything. We have a standing frame to get the feeling of being upright so that he can hopefully build some muscle.
He has a few more surgeries coming up next year and continues to amaze not only me but also those around him with the perpetual smile on his face. He is so resilient; he truly takes my breath away with his undying strength and courage. Whenever he gets upset during a test, I play a video of Hollie singing and dancing and he instantly smiles and gets through what he has to. He adores his big sister.
At our last appointment, they gave me a life expectancy for Xzavier. Then they factored in all his problems, and it further shortens his life. Honestly, nothing prepared me for that appointment. For the first time I feel broken. I hope and pray with everything that I have, that he far exceeds everything they have said to me.
Basically, if he doesn't walk soon his life will be cut even shorter, especially with the combination of his respiratory issues. And if he doesn't start to put weight on, his body is going to fail him even sooner. He has managed to put on a little weight, but is still just flat lining in his weight, way under the percentile line. We have increased his food, in the hopes that he can handle them and hopefully gain weight, and he is showing little improvement. No matter what solids I try to feed him, and special additives I give, his body is unable to absorb the nutrients he needs. This is made harder as he doesn't really eat solids, it has to be purée.
As it turned out, genetics were the end of the road for us, along with many other ideas that doctors have had. I feel as if this therapy could really help my baby boy. I have been reading success stories of other parents and I hope more than anything that one day I will be able to share my success story, and give other parents the hope that I so desperately desire. Over 18 months of very expensive hospital bills, etc.. renders my possibility of affording the therapy on my own nearly impossible. I have gone over finances again and again, and although there is nothing more important to me right now than getting him this therapy, and it really kills me to say this, but I simply cannot afford it alone unfortunately I had to quit my job due to hospital appointments and issues with feeding tubes etc, and I am now his full-time carer, unable to seek employment.
It feels as if my little family are constantly at the hospital. My children don't get to do a lot of things that other kids do, Hollie has missed out on Xzaviers first Easter because we were in hospital. All she wanted to do was hunt for eggs with her bother and she couldn't. It breaks my heart that Xzaviers older sister can’t enjoy all the milestones most sibblings share with each other. We try in many ways to make up for the lost time we spend in hospital, but she has missed out on friends parties, play dates, and also some very important time with her little brother. My kids have been though so much already that if we can get Xzavier into this therapy we could lessen the appointments and we would be able to spend more quality time together as a family, and most importantly it was also give Xzavier more quality of life.
http://www.therapiesforkids.com.au/treatments/intensivetreatments/
Organizer
Liz Battersby
Organizer
Riddells Creek, VIC