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Sonny is an 8-year-old boy who was happy and healthy up until the age of 5 when in July 2018, his life and that of his loved ones changed drastically, when he was diagnosed with X-linked cerebral Adrenoleukodystrophy, also known as Symptomatic ALD, a genetic brain disorder primarily affecting the central nervous system.

This is a rare, progressing life limiting condition which affects 1 in 20,000 males, causing severe physical and mental disabilities. In cerebral Adrenoleukodystrophy (ALD) nerves in the brain no longer work properly and the person’s physical and mental abilities begin to deteriorate.  Functions such as speech and mobility are lost completely.  There is no treatment for ALD once symptoms appear.  Sonny’s health quickly deteriorated since his diagnosis, within 3 months Sonny lost the ability to walk, speak and needed an emergency gastrostomy tube to be tube fed. His body was then attacked by cruel episodes of dystonia (all over excruciating painful muscle cramps).  His health has since worsened over the past 3 years as he is now completely unable to communicate or express himself through facial movements and he is wheelchair bound. Sonny is completely dependent on his parents and sisters for all his needs. It is also unclear if Sonny can hear or see; his family hope he can and so they continuously talk to and reassure Sonny with love always.  

As a result of his condition, Sonny continues to suffer from severe dystonia which causes painful spasms through his whole body which can occur as often as every 15 minutes. There is no cure for ALD once symptoms present, and in Sonny’s case, deterioration is rapid. However, hydrotherapy is the best form of therapy for Sonny, as this helps to ease the pain he feels all over his body. Having a hot tub in his own garden will ensure that he can instant direct access to have this therapy daily without having to travel to offsite locations, which travelling alone often triggers more episodes of dystonia. Therefore, we are reaching out to you to help provide Sonny with a hydrotherapy hot tub of his own in his garden, so he can use this every day all year around to reduce his discomfort.  

We are reaching out with open hearts and hands asking for your help in getting Sonny back into the water where he can benefit from daily hydrotherapy. Please be generous if you can help us purchase a suitable hydrotherapy hot tub for Sonny and his family to enjoy together. 

Thank you


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