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Hot Tub Appeal For Girl With Rare Genetic Disability

July 26, 2011

The parents of a toddler with a rare genetic disorder say they are stunned by the response to an appeal for hydrotherapy to help their daughter.

Eighteen-month-old Maralise Van Wyk, from Bingham in Nottinghamshire, was diagnosed with Pontocerebellar Hypoplasia Type 2 (PCH2) in June.

Just one of five UK children with PCH2, Maralise’s muscles are constantly tense, only eased by warm water.

Following BBC coverage, a hot tub firm has come forward to donate a spa pool.

Lynda Smart, UK retail sales and marketing manager for Hotspring World, said she saw the online article about Maralise and felt she had to help.

“I have three healthy children and an 18-month-old grandchild and reading about Maralise just makes you so grateful for what you have,” said Mrs Smart.

“We are really thrilled to be able to help and put something back.”

Maralise’s parents, Becky and Jenico, said they were “completely overwhelmed” at the the messages and offers of help the family had received.

“Both Jenico and myself are overwhelmed at the generosity of Hotspring World for donating an incredible hot tub that will help our daughter Maralise,” said Mrs Van Wyk.

“Having access to daily hydrotherapy will have an amazing impact on her life and ease her discomfort.”

Hydrotherapy success

At the beginning of July, family and friends of Maralise started a project to try to turn the couple’s garage into a hydrotherapy centre, complete with hot tub and, if possible, sensory music and lights.

Mrs Van Wyk said: “There are no hydrotherapy facilities in Rushcliffe so Maralise goes to hydrotherapy once a week at the Rutland House School for Parents.

“The difference it makes to her and her muscles is just incredible. She is very uncomfortable a lot of the time and she will cry all day. The only thing that stops her crying is being in water.

“Maralise cannot travel far and at the moment I put her in the bath but as she’s getting bigger, she’s getting more difficult to handle and the reality is, I’m going to struggle to offer her that relaxation unless we can offer it at home.”

Mrs Van Wyk, 32, who has taken extended, unpaid maternity leave from her job as a secondary school teacher, administers drugs to Maralise 14 times a day.

“I also have to feed her with the pump through her tube, do physiotherapy every day and stretches, plus she has to spend time in her standing frame.

“She also has to have sensory stimulation so it is a full-time job. Maralise is a very poor sleeper so sometimes doing all that, day in, day out, on four hours’ sleep is tough.”

‘Amazing friends’

PCH2 is an auto-sominal recessive condition, meaning that both parents carry a faulty gene, resulting in a child with the disorder. Children born with the condition are not expected to live past infancy, medical studies say.

Becky is philosophical about Maralise and over the small chance she had of meeting a partner such as her South-African born husband of five years, who also carried the faulty gene.

“I believe Maralise was meant to be the way she is and change our lives for the better,” she said.

“I am such a different person now. Never for a second did I think I was going to have a disabled child and I have grieved for the loss of the life I thought I was going to have.

“I have met some amazing friends whose children have disabilities and I don’t worry about the small stuff. When she smiles or tries to babble back to you, it is all forgotten in an instant.”

The family has also been donated a floor by Nottinghamshire-based Slack and Co as well as plumbing advice from Mark One Services, SC Electrical and ex-builder Brian Cutts.

Mrs Van Wyk added: “We will be doing most of the work ourselves. We’ll attempt to put up some plasterboard but we need a plasterer, garage door and internal door.

“We have sold our car and raised £2,500 so far but to make it a really good, long-lasting hydrotherapy room, we need some help and to raise about £6,000.”

One Comment leave one →
  1. Cristin Melsheimer permalink
    October 6, 2012 6:15 am

    Hot tubes that are made of stainless steel are the best because the require less maintennance and they can resist acid attacks. ;’..;

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