The hopes to build a special needs house for disabled young brothers Ben and Jake Connolly from Mountmellick have reached a big milestone, with planning approved by Laois County Council.
With nearly €150,000 raised, the boys’ mother Nicolette Connolly is relieved at getting approval to build the wheelchair accessible house.
“We are over the moon to get planning permission, it means we can finally start something now,” she said.
The dormer bungalow in Graigue, Mountmellick will include hoists and a wetroom for the boys, a sensory garden, and a day room for nurses, giving the family much needed private space.
Construction will start as soon as possible this summer. The house is estimated to cost half a million euro including furnishings and equipment. While less than a third has been fundraised to date, they have been advised to get underway, in hopes money will continue to come in.
Ben aged 6 and Jake aged 1 both suffer from an extremely rare medical syndrome that only affects boys, called Allan Herndon Dudley Syndrome. It causes epilepsy, progressive brain damage and loss of muscle control, leaving them “floppy like a ragdoll”.
The boys are tube fed and are on medication. They need round the clock care, provided by their parents Nicolette and Terence, with some daytime help from HSE nurses and occasional respite given by Laura Lynn children’s hospice.
Ben has been sick lately.
“We have had a rough time since January. He had two seizure meds adjusted, and persistent respiratory infections. Hopefully he is starting to settle now. Jake is fairly good thankfully,” Nicolette said.
After Jake was born with the same syndrome, their parents quickly realised their two storey home in Mountmellick was too small for all the equipment and hoists needed to care for the boys safely, as they grew.
They had no room to extend could not afford to move. So began a public fundraising campaign a year ago to build a safe home.
As the boys have a short life expectancy, the house will be given to the Laura Lynn Children’s hospice after they pass on, to become Ireland second children’s hospice, as Ben and Jake’s lasting legacy.
With huge support from communities in Mountmellick, Terrence’s home town of Portarlington, Newbridge and even nationally, the campaign has raised €148,939 to date.
One brave little girl from Mountmellick recently cut her hair to raise money.
Ruth Rawlinson aged 6, had 14 inches of her long blonde hair cut off for the Rapunzel Foundation, for children’s wigs. The money she raises is being split between the Irish Cancer Society, and the Ben and Jake Connolly Trust.
Meanwhile lots of women have signed up to run the VHI Dublin Women’s Mini Marathon for the trust on June 1.
Nicolette is grateful for the ongoing support.
“We are totally indebted to the local communities, we would not be here about to start without them,” she said.