Three year old Nova Martin-Roxburgh needs three specialist supportive body suits to help her walk when she gets older.
Ann Chapman, the manager of Pendine Park’s Bodlondeb care home in Wrexham, is a talented baker in her spare time and was so touched by Nova’s plight that she jumped into action.
The result was a bright pink cake in the shape of a dragon that’s being raffled in aid of the Help Nova to Walk Fund.
To date the dragon cake raffle has made £625 in funds but more is expected to be raised as the raffle has yet to finish.
In addition, the Pendine Arts and Community Trust, set up by Pendine to support cultural and community initiatives, has donated a further £250.
Nova’s family have set a fund-raising goal of £4,000 for three suits which will be worn by her for between six and eight hours a day and are designed to help develop her muscles better so that she can support herself as she walks.
Donations for the fund can be made online at a fund-raising page set up by Nova’s family: https://uk.gofundme.com/f/help-nova-to-walk
The toddler has a rare congenital disorder involving a chromosome deletion which was only discovered when her quick-thinking mum, Samantha Martin-Roxburgh, 28, rushed her to hospital twice within 24 hours when she was just a few weeks old.
“The first time we went to the hospital the doctors checked her over but said they could find nothing wrong and sent us home again.
“But when we got home I just was not happy. I knew in my heart something was seriously wrong and I took her back to the hospital again within a few hours.
“When we got there Nova went into a fit and became unresponsive. She immediately had to be put in an induced coma. The doctors said if I had not taken her back when I did she could have died.”
Later tests revealed Nova has a global development delay which means she has impaired vision and speech, she cannot walk properly and is at serious risk of life-threatening seizures.
Sam had to give up her job as a make-up artist to care for Nova full time.
“It is such a rare condition that there is not much research on it and the medical team cannot tell us what Nova’s life expectancy is.
“All we know is that the condition is very serious, we don’t know how long we will have her in our lives, and we have to make as many precious memories as we can with our beautiful little girl.
“That’s why we need the suits which are vital to give her body extra support so that she can more easily walk. It will make a huge difference and enable her to do so much more.”
Sam, of Liverpool, is grateful to have the support of friends and family including her partner, Stephen Belli, originally of Mold, who is Nova’s step-dad.
Stephen’s mum Julie Belli, who lives in Mold, is friends with Ann Chapman and it was while they were chatting one day that Julie told Ann about the fundraising campaign for Nova.
Ann was so moved by Nova’s heartbreaking story that she felt she had to do something to help.
“I was dismayed that the support suits which Nova so badly needs are not available on the NHS. They are crucial to her health and wellbeing.
“There was no question that I wanted to get behind the campaign and I knew that when I told my work colleagues this heart-wrenching story of a little child in such desperate need then the team here at Bodlondeb would want to help as much as they I do.”
Little Nova and her family were overcome with emotion on their first time of seeing the cake which Ann made when they made a visit to Pendine Park.
The Bodlondeb staff gathered at the entrance to the home when Nova and her family arrived, holding up a “Welcome Nova” banner and cheering as the smiling toddler came to greet them to be presented with the dragon cake.
“We are overwhelmed and hugely grateful that so many people who we have never even met before would go out of their way to help us. Ann and the Bodlondeb team are amazing, absolutely amazing. Their generosity has really touched our hearts.”
Ann also made a separate smaller cake topped off with a golden iced edible tiara for Nova to enjoy as an extra treat.
“Nova is adorable. She is a little princess with a gorgeous smile. She has been through so much that I wanted to bake a cake especially for her to enjoy, as well as the one to be raffled off.”
Pendine Park owner Mario Kreft MBE said:
“The Pendine Arts and Community Trust was established to support worthy causes. If ever there was a little girl in need of its help then it is Nova.
“We are enormously proud that Ann and fellow staff are helping raise awareness of this important fundraising campaign and we had no hesitation in making a donation to help Nova’s family buy the suits which will change all their lives for the better.”
Sam also has another daughter, Aurora, aged one, and two sons, Jack, five, and Lucas, eight.
“We all love Nova so much and we will do anything we can to help and protect her.”
Aurora joined the family on their visit to Bodlondeb, as did the sisters’ two grandmothers Julie Belli and Shirley Martin-Roxburgh, and auntie – Sam’s sister – Emily Martin-Roxburgh.
Nova’s step-dad Stephen, 28, who is also her godfather, said:
“I have known Nova all her life. She is a fun, bubbly and totally entrancing little girl. She is battling so hard to lead a normal life, she is a total inspiration to us and deserving of everything we can do to help her. We will go above and beyond to raise enough to buy these suits.”