Eighteen month old Maralise Van Wyk, from Bingham in Nottinghamshire, is one of only five children in the UK diagnosed with the rare genetic disorder Pontocerebellar Hypoplasia Type 2 (PCH2). The condition causes her muscles to be constantly tense, causing considerable discomfort, which is only relieved by immersion in warm water. The condition is very rare and Maralise has it because both her parents carry the same faulty gene. The chances of this occurring are said to be roughly one in 500 million.
Maralise’s mother Becky, 32 has to provide her with almost constant physiotherapy and stimulus, and administer medication 14 times a day. This has become a full time task and she has had to take long term unpaid leave from her job as a teacher.
Maralise currently undergoes hydrotherapy once a week at the Rutland House School for Parents. She is unable to receive more frequent treatment as there are no hydrotherapy facilities closer to home in Rushcliffe. Maralise’s parents, Becky and Jenico, are in the process of converting their garage into a hydrotherapy room of their own, having sold their car to raise some of the money they need, and have made an appeal for help.
“We are really thrilled to be able to help and put something back.”
HotSpring World’s Lynda Smart became aware of Maralise’s plight and arranged for the company to donate a hot tub to the family to provide for her hydrotherapy needs, and several other local businesses have agreed to help out with donations of materials, equipment and plumbing advice, including Slack & Co Floors, SC Electrical, Mark One Services and Brian Cutts.
Mrs. Smart said, “I have three healthy children and an 18-month-old grandchild and reading about Maralise just makes you so grateful for what you have. We are really thrilled to be able to help and put something back.” Lynda says she hopes to get the chance to meet Maralise, who is the same age as her own granddaughter, and added, “a few of my team have told me that they were touched by this too and were very proud to work for our company.”
HotSpring World have a history of charity work to benefit sick children. Earlier this year they ran an Easter Egg donation campaign for Nottingham Children’s Hospital and also raised over £8,000 for Make-A-Wish Foundation® UK, a charity which makes wishes come true for children facing life-threatening illnesses.
Becky and Jenico plan to do the bulk of the converting work themselves. They have raised over £2,500 so far and the total cost of the hydrotherapy project is expected to be around £6,000.
Children diagnosed with Pontocerebellar Hypoplasia have no motor or mental development, epilepsy is frequent and they do not have the ability to communicate. Read and learn more about Maralises condition here.