Saturday 27 December 2014

Mother of disabled son hits €10k target in 24 hours thanks to Independent.ie readers

Family struggled to raise funds for months before turning to the media

Published 01/08/2014 | 14:06

Adam is missing the 'connector' between the left and right side of his brain, resulting in serious illness.
Adam with his mother on his fourth birthday
Adam was a very sick baby - spending his first year of life in Temple Street Children's Hospital.
Adam with his brother
Adam with his brother Eamon
Adam spends most of his time in bed and must be carried everywhere.
As Adam grows, it's harder for family to carry him and they need special help.
Adam has been waiting for a wheelchair for over 18 months.
Adam has one 'perfectly formed' eye but doctors say his brain is 'working too hard' to focus on vision. He gets 'patches' of cloudy eyesight in one eye intermittently but is legally blind.
Adam's condition detoriarted last January, leaving him with night-time seizures. He had to have an ileostomy bag fitted.
Adam must be fed through a tube, which his mother Rebecca changes. This requires sterile equipment, as does the ileostomy bag.
Rebecca's car had to be adapted to fit Adam's needs but as he grows those needs are changing.

The story of Rebecca and Adam Conlon exclusively appeared on Independent.ie on Wednesday the 30th of July and within 24 hours the mother of three had raised the necessary €10k funds to keep Adam at home.

Rebecca, who lost her husband to a brain tumour in December 2011, was trying to raise €10,000 to supplement a home improvement grant to allow Adam to stay at home with his siblings.

Adam Conlon(4) has a rare condition called 'Mowat-Wilson Syndrome' - one only 147 cases in the world - and the required equipment includes wheelchair ramps, as Adam cannot walk, and 'sterile bathing facilities' which are required to avoid infection.

Rebecca applied for the house adaptation grant over three years ago but only received approval recently. As part of this process, a surveyor was called to the house to assess the cost of the works and he estimated the cost at over €30,000 - €19,000 more than the grant will cover.

She set up the fundraiser months ago and had managed to raise just over €3,000 of her €10,000 target before being featured on the site.

She contacted Independent.ie yesterday, saying the support has been "overwhelming".

"I hit my target late last night after months of trying to raise money....people were amazing in their support."

"The difference this will make to Adam’s quality of life and that of his brothers by having him at home is indescribable. "

"I wish there was some way to show our gratitude but please know how thankful I am to you all. "

Adam's fundraising page will remain open until October, when Rebecca will run the 'Dare To Survive' challenge race.

The fundraiser has now hit €12,000 and Rebecca says that anything raised above the €10k needed will be donated to the Cliona Foundation, which provides support for critically ill children.

Rebecca had spoken to Independent.ie about the needs of disabled children changing too quickly to keep up with delayed grant and equipment approvals from the HSE.

"All equipment takes 12-14 months to arrive, and by that time he's grown out of it and has to be reassessed."

The support she's received has inspired her.

"Some of the messages I have had are lovely".

"I am thinking of setting up an online forum where parents of disabled children can chat, swap ideas and maybe even make use of old equipment that is sitting around in houses that children have grown out of."

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