A Haywards Heath family is appealing for help to enable their son with cerebral palsy to undergo a life-changing operation that could give him the chance to walk unaided like his twin sister Alice.
Daniel and Alice Hartin who live in Heath Road, were born three months prematurely in May, 2011 at the Royal Sussex County Hospital in Brighton.
They spent two months in the Trevor Mann Intensive Care Baby Unit before they were well enough to be transferred to the Princess Royal Hospital where they spent another four weeks.
Their mum, Kate, said: “Today, Alice is a lively, caring sister to Daniel, who was diagnosed with a type of Cerebral Palsy that means he has suffered irreparable damage to some of the white matter of both sides of his brain. Consequently, he is unable to walk or stand unaided. He has standing equipment to help him interact with his sister and playgroup friends at the same eye level but the fact that he can’t walk, doesn’t end there. It means his educational and emotional wellbeing is at stake.”
Kate and her husband, Barry, are raising funds to pay for an operation in America called a Selective Dorsal Rhizotomy - a neurosurgical procedure aimed at reducing spasticity or tight and stiff muscle tone in the lower limbs.Although the delicate and highly skilled operation is performed in this country, NHS funding is almost impossible to come by because so few surgeons carry it out.
Kate said: “We are looking to St Louis Children Hospital in Missouri to operate this summer before deformities and bad muscular habits take hold. There are deformities already in Daniel’s feet through lack of use. This operation will give Daniel the best chance to walk unaided and live a more independent life that would otherwise not be possible.”
“The twins are starting pre-school this September and it means so much for us to get Daniel on a ‘level footing’ with his sister as early on as possible, for his social interaction and development.”
The family needs between £60,000 and £70,000 to cover the entire cost, which include physician’s fees, hospital charges and three weeks of outpatient therapy sessions as well as accommodation and specialized intensive and daily physiotherapy back in the UK for up to one year.
Kate said: “We have raised £11,000 but the pressure is on to raise as much as we can, as soon as we can.”
Daniel has an appeal page: onesmallstep You can also donate by text. just text: 70070, type: DCTH55 and the amount you wish to donate.There are various fundraising events, including a dinner and dance on July 4 at The Birch Hotel in Haywards Heath with raffles and an auction. Tickets cost £55 for a three course meal, a drink on arrival and a donation to Daniel’s appeal. The theme is American Independence Day because of the date and because Daniel’s operation is in the USA.
At the Spring Festival on Muster Green, Haywards Heath on April 27 there will be a stall selling various items to raise money for the appeal.