Nicholas was born on the 4th of February 2013. He was a very small baby just 2470grams and a cause for concern by the Drs. We spent the first 7 days in hospital proving that he could gain weight before being allowed to take him home. he's our 3rd child and life was hectic but awesome. He was always on the small side and putting on weight was a constant battle. His muscle strength was never very good either. When he was around 7 months old I noticed his right foot seemed to turn in when he was assisted to stand. That combined with his lack of enthusiasm for solid food and weight loss led to an emergency paediatrician visit. One of the possible causes for his presentation was cerebral palsy. So an MRI was done which ruled that out and left us wondering. We started attending physiotherapy, speech therapy and a dietician to help him get by. In the new year around his first birthday we started attending early intervention classes. We've seen paediatricians, paediatric neurologists, geneticists and are now under the care of a specialist neuro muscular clinic. Which is in Brisbane which feels like a long way away when he's hospitalised which he has been now for over 6 weeks.
He was diagnosed officially in August 2016 with a very rare neuromuscular condition seen in roughly 100 children worldwide.
we are trying to raise money to purchase a vehicle that can be modified to take his power chair. The new system that is coming will modify a vehicle so long as it is less than 2 years old.
He is now restricted to his wheelchair not only for his mobility and independence but also for his health needs as his ventilator that he is dependent on now can be fitted to it.
He's such a strong, determined, cheeky, smart and happy little boy and we want to be able to give him every opportunity we can to Experience life independently as most 4 year olds need to and for as long as he is able. He's a fantastic very loving big brother to his baby sister and a much loved little brother to his two older siblings. He makes us crazy, makes us laugh and keeps us on our toes with his antics.
Any support you give is not only supporting his needs but our whole family by taking some of the pressure off at such a stressful and difficult time.
Wish us luck!
- Helga Visser
- Maki Soga
- yoshikiyo wakimoto
- Shinichi Tomita