Please scroll down to the bottom to see the latest updates and the total raised so far! Thank you for all of your kind donations and support in many ways, we are so grateful.

Thomas is 14 years old and has Quadriplegic Spastic Cerebral Palsy. His spasticity and muscle tone in his legs needs controlling. His neurologist has assessed him and has said the SDR operation is his only option. Unfortunately the NHS do not fund this operation with his criteria. It will cost £16,000 plus £9,000 for intense physiotherapy. This operation will change his life giving him comfort and making it easier for his care as he is a bright able boy trapped in a body that does not work, which is extremely frustrating for him.

Thomas’s Life Changing Journey

Our son Thomas was born 9 weeks premature, due to me having placenta previa. He went straight to SCBU after an emergency caesarean section. He was a healthy weight of 4lb ½ oz., but a very poorly baby. He was ventilated at 23 hours and had a pneumothorax and 5 chest drains inserted. We are extremely grateful that Thomas survived, he is our world.

Unfortunately, he was diagnosed with cerebral palsy at 9 months old which was confirmed after a head mri at 16 months saying he has quadriplegic spastic cerebral palsy and periventricular leukomalacia. For Thomas this means he cannot sit unaided, stand or walk. We have to feed him his main meals, care for him, dress him, turn him over several times at night and assist him with his homework and get anything he would like to play with.

We are very lucky that medically, Thomas only struggles with reflux. He can see, hear and talk, it is just his body that does not work. He has had several operations in his life, with hernia’s, squint surgery and a big hip operation due to spasticity, and all have been a success. He has enough strength in his right arm to control his power chair that he has been driving since he was 4 years old, giving him some independence.

Thomas is a very bright intelligent boy, who will be starting his GCSE’s in September 2018, he attends a mainstream secondary school with full support in his lessons as he cannot write or access his school bag. Over the years he has tried activities giving him experiences we will not be able to give him now as he is heavier, as we rely on using a hoist to transfer him from his powered wheel chair.

We have been very strict with Thomas in doing his physiotherapy since he was little, and had schools support over the years too. He attended Ladderbacks, part of conduction education and tried hippotherapy. He also has had hydrotherapy, and has managed to step in the water. He has had a standing frame since he was at least 2 years old. The last few years it has become noticeable how the spasticity has been affecting him more, his left leg hurts and his foot turns inwards and his right knee is very stiff.

Over the last couple of years Thomas has tried oral baclofen, but he didn’t react well with the side effects, so we were referred to see a neurologist at Alder Hey Children’s hospital to find out what is available to control the spasticity to get rid of the pain that he is in. There are 3 options to treat the spasticity: -

1 Medication

This would make Thomas docile and he would not be able to concentrate to do his education or fulfil a career.

2 Intrathecal Baclofen ITB therapy

This would make Thomas too floppy to sit up in his chair and to drive his power chair, and possibly would lose the head control he has.

3 SDR Selective Dorsal Rhizotomy (SDR) operation

This will remove the spasticity from Thomas’s legs permanently taking away the pain he is in.

As you have read, the only option we have is the SDR operation, BUT this is not funded through the NHS. Each person is graded with gross motor function scale (GMFSC), Thomas’s is 5 the highest as he is severely disabled with no independent skills, so if the operation was to ever be funded by the NHS, they would never consider him as he has no potential of walking. Miss Pettorini the surgeon at Alder Hey believes that Thomas is entitled to a better quality of life for care and comfort, even if he will never walk independently.

It is difficult to predict what Thomas will be able to do without the spasticity, as he has had it all of his life. We have had it confirmed that he will be pain free, at the moment he can't always lie on his left side at night as he is in pain, and is in pain while dressing and toileting him in the morning. We will all get a better night’s sleep giving us a better quality of life. It has been mentioned that with Occupational therapy support he could gain better hand function, which is like a miracle for us.

The cost of the operation is £16,000. After the operation there will be a strict physiotherapy routine to do for at least two years to strengthen the muscles, this means we will need to fund private physiotherapy and hydrotherapy, and equipment for us to do the physio with him such as a trike. (Thomas has had two trikes when he was smaller, and was able to pedal!) So, we are looking to raise a further £9,000 totalling the £25,000 we are asking for.

Thomas deserves this operation he has so much to give in this world, he is so caring and considerate and is desperate not to be disabled and faces challenges every day being trapped in a body that doesn’t work. This operation will take an obstacle away from him, and he is thoroughly worth it.

We would like to thank you for taking your time reading our story and would like you to join us seeing how his life will change and if you can help us raise the funds we would be extremely grateful. Thank you.

http://www.alderhey.nhs.uk/departments/neurosurgery/selective-dorsal-rhizotomy-sdr/

https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy