We are fundraising for our son, who has cerebral palsy, to be able to access surgeries and therapies not covered by the NHS, to enable him to fulfill his potential.
Our beautiful cheeky little boy from Chichester in West Sussex was born in January 2012 a whopping 15 weeks premature. Sebastian spent his first 5 months of life in hospital.
Unfortunately, the procedures which saved his life initially caused significant damage to his airway. His throat was blocked by scar tissue so he underwent a tracheostomy (breathing tube inserted into the neck) to allow him to breathe. He was also unable to feed so he started off with a nasogastric tube which was later changed for a Mickey Button (feeding tube directly into the tummy).
For over two years Sebastian needed round the clock care. We had a team of nurses as he needed someone awake with him 24/7 to give him nebulisers and oxygen, suction, tube feeds and medication, to change dressings and to perform life saving procedures should his tracheostomy tube come out or become blocked.
With so much going on just to keep Sebastian alive and well, and with this being our first child, we hadn’t noticed that his wobbly steps were anything other than those of a toddler leaning to walk.
Shortly after Seb learned to walk we were given a diagnosis of Cerebral Palsy.
Sebastian has hemiplegia which means that his CP affects one side of his body (his right side). The way that this affects him is that his ankle is very tight and his movement is very limited. He draws his right arm up as he moves and his walking is very wobbly and it often looks like he is staggering. This also means he falls over a lot which is heart breaking.
The bone in Sebastian’s right leg is not growing as fast as the left so he wears a built up shoe, inner soles to support his feet and a hinged splint on his right leg to try to stretch out his ankle during the day and to stop him walking on his tippy toes.
We see the physio and occupational therapist every few weeks and have a program of stretches and strengthening exercises which we follow at home.
Sebastian has just turned 4. He has had pieces of rib cartilage built in to his airway to widen it and last year the tracheostomy tube was removed. For the first 2.5 years his tracheostomy meant he was utterly silent. He has since learnt to talk and although his vocal chords are very damaged and his voice very husky he is quite the chatterbox!
He still has a rather large hole in his neck which we keep hidden under a bandana. We are waiting on more surgery to close this which may include further grafts from his ribs.
Sebastian can walk but has a special needs buggy as he is slow and struggles to go very far. He is unable to climb, descend stairs, skip, hop, walk on uneven ground. He can’t keep up with other children his age but he never grumbles!
Sebastian has had a few operations to his tummy as he used to vomit constantly. He has a weakness which seems to cause his diaphragm to part allowing his tummy to travel upwards into his chest cavity. This is very uncomfortable for him and he has had several surgeries to repair it.
Sebastian is still fed via the tube into his tummy but we are working with a team of specialists of try to get him to take more orally.
He is a little behind his peers and we suspect that he may have some learning difficulties but he is also utterly scrummy, very cheeky, kind and caring.
Our little boy is the centre of our universe so we are setting up this fund to try to maximise his potential.
Our hope is that Sebastian will be a candidate for SDR. Selective Dorsal Rhizotomy is a surgical procedure which can reduce spasticity. It is not routinely offered on the NHS so many families like us need to fundraise in order for our children to benefit from it.
For Sebastian to have SDR at Great Ormond Street Hospital will cost around £25,000.00. We have chosen this hospital as Sebastian is already under their care so we believe they know him best. During our many trips to GOSH I have met up with parents whose children have been through SDR and each time I have been amazed at how well they are doing!
Sebastian will need to undergo a series of scans and assessments to confirm that SDR will work for him. If the surgery goes ahead Sebastian will need lots of intensive private physio for years after to maximise the results.
Our little soldier has been through so much in his short life. We are so very thankful that he is doing well and that he is mobile but as parents we would just like to see him free of pain and discomfort and give him the opportunity to keep up with his friends.
We are starting off with a target of 50,000.00 to cover the SDR and aftercare including private physiotherapy. Other items which we are hoping to cover with our fundraising are as follows:
- Any mobility aids
- Any orthosis (splints, strapping systems etc.).
- Cost of building up shoes.
- Tuition and membership costs for activities and therapies which would help Sebastian build strength i.e hydrotherapy, conductive education.
- Exercise and physiotherapy equipment for home or school i.e treadmill, gym mats, gym balls.
- Tuition to help Sebastian academically to keep up with his peers.
- Cost of living when Sebastian is admitted to hospital or when he is receiving treatment which is not local to Chichester.
If Sebastian is not found to be suitable for SDR we would use funds purely for the above items to maximise his mobility and cognitive development.