Bear's got big adventures ahead as family secures new specially adapted vehicle

Earlier this year Bear Butler’s parents, David Butler and Maria Reynolds from Kilbeg near Kells started a campaign to raise funds for a specially adapted vehicle slamming the lack of Government support for families.

Bear (8), devastatingly suffered a stroke at birth which resulted in him developing Cerebral Palsy. The youngster who is in constant pain on a daily basis has also been diagnosed with epilepsy and autism and is unable to walk.

As his condition is deteriorating, Bear can no longer use a manual wheelchair and has had to upgrade to a powered wheelchair in order to get around needing a customised vehicle.

Thanks to the generosity of the public, a significant amount was raised through a GoFundMe page towards the €60,000 required for the vehicle and last week Bear made his first journey out of the house this year. Dad David said the development has “opened up a whole new world” for his son. He added:

“We picked it up last Thursday week so we have it over a week now. It was amazing to finally get it. It has opened up a whole new world for our family. To give Bear some kind of normality in his little complex life it is incredible, there is that bit of independence for him now and even for his mental health to go into the car and go out is fantastic.

“We have a lot of hospital appointments to catch up on so at least we will be able to do that as well.

“Everyday he is saying where are we going today. We brought him to Loughcrew last week and to see him in his chair driving around the grounds there was just amazing.”

“We couldn’t have the achieved it without the support and the kindness shown to us. The generosity has been incredible, everyone has had a tough year and a half but the kindness has been overwhelming and people have really got on board our campaign.”

The Kilbeg dad who is full time carer to Bear along with wife Maria says he is more determined than ever to fight for the rights of disabled children and their families. He added: “We are still going to keep advocating for government supports and continue to fight on the transport issue. We are just one family; we were lucky to be able to drum up such phenomenal support from the public but a lot of families wouldn’t be in a position to do so.”

Because the youngster is home schooled, the family have been cut out of the loop completely in terms of supports but even children enrolled in school still have to fight.

“The school can apply to get the child from the house to the school but to get out and about or even to hospital appointments there is no government support.

“The transport scheme was scrapped in 2013, all of the correspondence that I have received from the various departments basically they are saying work is still ongoing. There is a group set up but it is not ready to present to cabinet yet. Work ingoing is great but that is since 2013 so it is just a joke.

“The Minister for Justice’s office has been in contact with me regularly about it but they are being shut out of the scene now as well which is a bit frightening.

“It is still getting passed from pillar to post unfortunately, we are still low priority but we will still keep fighting.

“I'd love to call on the Department of Health, Department of Transport, The Department of Disabilities and the Department of Finance because unfortunately there are all involved due to the complex nature of the legalisation needed.

“Life is tough as it is but when you have to fight for a basic right it makes things even harder.

“Public transport is desperate for people with disabilities it has been an ongoing issue for years but unfortunately it is not getting any better.”

“Motability Ireland in Ashbourne where we got the vehicle were fantastic and looked after us from day one since we started the campaign, they were on the phone to us with advice and options available to us because it is very customised work.

“They did all of the work and the care and attention given to us was unbelievable.”