Joe’s First Steps

Joe has Bilateral Schizencephaly, a rare disorder recently diagnosed, and needs therapy and treatment to give him the best quality of life.

joe wheel chair 2
£14580.50
Total raised
49 %
£30,000.00
Target
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87 donations

joe wheel chair 2

Joe was born in July 2008 3 weeks premature. When Joe wasn’t meeting his milestones, for example, sitting up, crawling (gross motor skills), we realised something was wrong and took him to a paediatrician.

At 9 months old Joe had an MRI scan and we were told that Joe had Cerebral Palsy. We saw doctors and specialists who all told us that Joe had spastic quadriplegic cerebral palsy. Joe was assessed to be a GMS level 4. We were told that he would probably never walk and be in a wheel chair all his life.

We started following world famous Dr Park and watched on social media as he worked miracles getting the children up to walking. We longed for this for Joe. We had an assessment at Bristol in 2013 for SDR surgery, life changing operation that realises spasticity. We were told that Joe may be a candidate for surgery, although the NHS were only paying for GMS level 1-3 and Joe was a 4.

We went home and vowed to work hard with Joe to enable him to build strength to hopefully get him to a level 3 so that the NHS would fund the operation. Only not long after, the operation was taken out of the NHS.

After watching hundreds of videos of children just like Joe achieve their goals we went back to Bristol for another assessment to get the ball rolling. We had our hearts set on SDR and have been working hard towards Joes health and fitness, in preparation for this life changing surgery.

However, this week we have taken a shattering blow. Joe’s MRI results showed that Joe has a rare brain malumation which is likely to be genetic. This disorder, Bilateral Schizencephaly, is the second rarest disorder in the world with only 7000 cases. Not much is known about it. This means Joe is no longer a candidate for SDR surgery as his tight muscles are not caused by spasticity so SDR will not help. We are devastated.

There are alternative therapies and treatment which will help Joe. We are going to continue to raise money to give Joe the best possible life he can have. Joe needs a new MRI scan and also a ECG on his heart. It’s been suggested that Joe had a stroke at 12 weeks gestation and, so we are now petrified that this may happen again.

As the NHS have somehow failed us we are feeling very let down and confused to say the least. There maybe an option to have a shunt put in brain to redirect the fluid.

Please help us raise money to pay for Joe’s tests, courses and any treatment that he may need.

Joe is a beautiful little boy, of sound mind and very happy, very alert and has lots of potential. He is trapped in his own body and held back by not being able to walk. We are determined to do all we can to make sure that Joe gets the best treatment and the best chance out of life. Please help us help Joe.