You can help little Natasha to walk by making donation

You can help little Natasha to walk by making donation

28 May 2014

LITTLE Natasha Falls has always defied the odds. Resuscitated at birth, she suffered repeated violent seizures in the weeks that followed, and her Ballygowan family were offered little hope.

Severe acid reflux, infections and pneumonia were all painfully endured as Natasha was diagnosed with Pitts-Hopkins syndrome and 18q deletion — an extremely rare chromosome disorder which delays development and affects muscle tone.

After a major fundraising effort baby Natasha underwent an intensive therapy course at the Children’s Memorial Hospital in Chicago, designed to bring her life-threatening seizures under control.

Now aged seven she is no longer plagued by the seizures, but her determined parents aren’t content just to have saved her life.

They have embarked on a second round of fundraising with the aim of getting Natasha to walk unaided. As their miracle daughter will never be able to talk, they simply want to provide as good a quality of life for her as possible.

The intensive physiotherapy which parents Natalie and Ian believe will greatly help Natasha’s mobility is not offered on the NHS, leaving the family no choice but to fund it themselves. Natasha will have to travel to Newry two to three times a week to a neurorehabilitation specialist, where she will undertake exercises to “retrain” her cognitive responses and strengthen her muscles.

“We took Natasha to an introductory session to see how she would get on and by the end of it she was actually initiating some of the repetitions of the exercises herself,” said Natalie. “The doctor said that she should respond very well to the therapy.”

The therapy has been given the go-ahead by Natasha’s doctors at the Royal Victoria Hospital, and Natalie is hoping to start the therapy as soon as possible — with three weeks of sessions every day, ping to three sessions a week after around six months. And after a year, Natalie expects that her daughter will only need one session a week.

“At that stage hopefully Natasha will have reached her potential and it’s only a case of maintaining what she’s achieved,” she added.

But each session costs £55 and to raise the thousands of pounds the family will need a number of local fundraisers are taking place.

“We just want Natasha to reach her full potential and then hopefully she won’t need this anymore,” said Natalie of the standing frame her daughter uses to get about.

“People with special needs do not get the help they need. They do not get enough support to realise their potential.”

Describing Natasha as a “real happy wee character”, the proud mum said her sociable daughter “loves noise and everyone all around her”.

“We have half the street in our house but I don’t mind,” she said. “She would love to be in the middle of it when they are all playing on the floor.

“She has no speech, none at all. She will never be able to talk but she has a good understanding.

“She absolutely loves school. She is nosey, and the teacher says she is always in the middle of it all.”

Thanking all those who have supported them so far, Natalie says Natasha already has a quality of life they never thought possible. Just last year there was a painful reminder of the seriousness of her condition when she was admitted to hospital to undergo an esophageal disconnection procedure. The aim was to alleviate her acid reflux, and in severe pain for six weeks “Natasha cried non-stop; morning, noon and night”.

The reflux and aspiration — inhaling particles of food and liquid into the lungs — had been so severe doctors considered feeding her intravenously. For her parents, however, it was not an option.

“For me, it was saying that it was a means to an end,” said Natalie. “The organs start to fail, it is a slow painful death.” Instead they bravely opted for the esophageal disconnection procedure, which Natasha was given just a one in five chance of surviving.

But despite all the heartache and hassle of the past seven years, her parents want to stress what a blessing she has been in their life.

“My aim is to get across to others what its means to have a child with special needs,” said Natalie. “Special needs is not to be looked at as a burden. It is a gift.”

Photographer Stuart Macrory is holding a family portrait day in Ballygowan Village Hall on June 15. For £50 each family receives a portrait with all money raised going towards the fund. Natalie has also written to all the education and library boards across Northern Ireland to encourage schools to hold ‘Wear Yellows’ which would see pupils paying £1 to wear a yellow item of clothing.

To find out more about how to donate via text and online visit www.natashafalls.co.uk or search on Facebook. Tree of Hope is running the appeal and cheques can be made payable to: Natasha’s Journey of Hope, 18 Brae Grove, Ballygowan, BT23 5TP.