Their story

Thomas and Dylan arrived on the 4^th January 2013 very early, nearly 10 weeks early. Weighing less than 3lbs they had to fight hard to survive but they did and thankfully soon began to put on weight and grow strong.

After 10 weeks in SCBU ( Special Care Baby Unit) they came home and finally we were free to hold and nurse our babies- after 10 weeks in hospital we were free to take care of our boys.

They thrived.

We all fell in love.

An MRI scan at 2 years of age showed that Thomas has some neurological damage. A formal diagnosis of Cerebral Palsy was confirmed.This explained why he had been slow to reach many of the expected physical milestones.

Thomas is  now 3 years old and he needs SDR ( Selective Dorsal Rhizotomy) surgery to increase the chances of being able to live and walk independently.

He continues to make good progress but he is still unable to stand or walk independently. Thomas is able to walk with his walker and enjoy chasing his brother around but he wants to do more, he wants to catch him!

The cost of having this life changing treatment in the UK is approximately £45,000.

Afterwards Thomas will need intensive physio therapy and numerous specialist pieces of equipment to achieve the best outcome from this operation. This cost is a further £10,000 each year for at least 3 years after the operation. Therefore we want to try and raise £75,000 in order to give him the best possible outcome.

If you would like to make a donation, organise an event, be sponsored or donate a prize to be auctioned please do. Your help will be life changing and would be hugely appreciated.

Further information on how to make a donation can be found in the donate section of this website

What is Cerebral Palsy?

Cerebral Palsy  (CP)is caused by damage to the brain. It encompasses different brain disorders originating during fetal development, birth or early childhood.  For Thomas, the extent of this ‘damage’ has evolved over time and it was only after having a MRI scan when he was 2 years old did the consultant start using the terms spastic diplegia and Cerebral Palsy. CP is associated with difficulties in movement, balance and posture. It can affect cognitive abilities, language and vision. In Thomas’ case it seems to be only affecting his gross motor skills. Though slow to learn the skill of rolling over, sitting unsupported, crawling, pulling up to standing, cruising and now walking, he has and it is important to understand that once these skills are learnt they can’t be unlearnt. CP is a non- progressive condition and so it can’t get any worse. If we can get Thomas up and walking, he will walk and these early years are the golden years.

It is estimated that 1 in every 400 children in the UK is affected by CP. Approximately 1,800 babies are diagnosed with the condition each year ( http://www.nhs.org.uk).

It is the most common physical disability.

What can help?

It is important to understand that the symptoms of CP vary greatly from child to child and depends on the classification of CP the child has. It is a life- long condition and it is as individual as you and I. What might be right for one child doesn’t necessarily mean it will be right for another.

Management

There are many treatments and management options for children with CP depending on the classification and severity of the child’s individual presentation. Current treatments include physiotherapy, occupational therapy, speech and language therapy, repeated botulinum toxin injections ( botox), hydrotherapy, hippotherapy( therapeutic horse riding) and rebound therapy ( trampoline). Medical management may include surgical procedures such as tendon lengthening and SDR ( Selective Dorsal Rhizotomy).

Physiotherapy

Physiotherapy is an essential part of Cerebral Palsy management. It aims to help children reach their full potential in movement, and allow them as much independence as possible. The main focus points of physiotherapy for children with CP are:

to manage high tone – spasticity is a common symptom of CP, presenting in different ways. This involuntary state of muscle contraction can limit a child’s development in movement, and an important role of the physiotherapist is to manage the tone to help a child complete more normal movement.

to increase strength – it is common for children with CP to have weakness in their trunk, upper body and lower body, as they have been restricted in their movements by their abnormal tone. In strengthening these muscles, movements which may have been difficult previously become easier to manage and develop. In particular strengthening of the core muscles in the abdomen and back help with sitting, crawling, standing, walking almost all gross motor skills, as well as improving balance which will in turn also help those skills.