This is Barney…
Barney is my 14 month old son, born at full term in February 2016. We had a rocky start - his birth was traumatic, leading to a 5 day stay in special care and being fed though a nasal gastric tube, but we made it home and started to get used to family life.
When he was 8 weeks old though, life got pretty scary as Barney suffered a seizure, stopped breathing and was transferred to St Mary’s in London for intensive care where he stayed for 4 days. He underwent lots of investigations, including MRI and EEG, and doctors gave us the devastating news that he has severe brain damage - only 30% of his cerebellum is present and he has a large reduction in white matter. Later that week, Barney was diagnosed with pontocerebral hypoplasia (PCH) type 2, which is very rare genetic condition that is life-limiting.
This was a confusing and traumatic time for us, as we tried to understand what was going on with Barney, tried to ensure his well-being and make some sense of what this diagnosis actually meant. Sadly, it’s still not clear what his prognosis is, except to know that most cases of PCH 2 are fatal in early life, and so we are trying to take every day with Barney as it comes, and make the most of his time with us.
The nature of PCH 2 is degenerative, and at 8 months, Barney was further diagnosed with infantile epileptic spasms, where each spasm damages the brain further and any neurological development stops, leading to regression of skills. For a brief time, Barney was able to eat solid food, he was able to smile and to laugh but these are skills he can no longer show and his last smile for me was in January. Being unable to feed meant that Barney underwent surgery and now has a gastronomy (which feeds directly into his stomach), but this puts him at risk of regular infections. Swimming or bathing in chlorinated water is supposed to help reduce this risk, and so we take Barney for hydrotherapy or put him in the bath whenever we can.
Barney really loves the water, and it is the only thing that gives him relief from the seizures which are now constant. His epilepsy has progressed into a drug resistant form, and our last hope of seizure control through a ketogenic diet is not working for Barney. We have been lucky enough to be allocated 3 sessions in a local hospice hydrotherapy pool, but there is three month wait for a slot, and if he is in hospital on the day, we lose his allocation.
Our only wish for Barney right now is to give him the best quality of life we possibly can, and to do that, we need to get him better access to water. Not only does he enjoy it, but being weightless helps his limbs which are getting stiffer as he grows bigger, it soothes and relaxes him and we hope it will also help with his sleeping, which is affected by his condition. He is only able to sleep for 3 hours at a time, and when he is tired the seizures are worse.
We have shared Barney’s story now because the best way we can get him into water on a daily basis is to use a hot tub, and since these usually cost many thousands of pounds, we are unable to achieve this on our own. Through the wonderful support of Andy Prior at Jacuzzi Cambridgeshire, we have been offered a hot tub for £4,800 with free cleaning chemicals, for which we will also get a safe outdoor electricity point installed. We hope that in time this will bring Barney the relief and enjoyment on a much more regular basis. We thank you from the bottom of our hearts if you are able to contribute in any way towards our goal.
Thank you for reading.
Shannon & Barney
For more information about PCH: