Hi,

As I’m sure you guys know , being a very proud family , we don’t like to reach out for help ever , so it has taken me a while to gather up the nerve to create this page for Ronan .

Anyone that knows us is aware that Ronan has cerebral palsy and a seizure disorder following a stroke in utero nearly 18 years ago , most of you who know us will also be aware of recent events in Ronan’s life , where he had a second stroke mid July and spent some time at MGH and a month at Spaulding rehabilitation in Charlestown.

Since returning home on August 20th , obviously his needs have changed now and also with a diagnosis of a rare mutation COL4A1 , (following genetic testing that was done at MGH ) which was the cause of this second stroke , it can put him at a higher risk for strokes too in the future and to which we can ascertain most likely was the cause of the stroke he had in utero.

Unfortunately this genetic testing was not available 18 years ago to know the cause of his stroke at that point when he was born.

Research and study of this mutation is being studied here in Massachusetts and the specialist that he will be seeing is very knowledgeable about it, but it does put a shadow over him now, knowing that we’re going to have to monitor and minimize his risks for strokes with the help of the stroke center, yearly MRIs at the stroke center too well into the future.

There could be a chance of clinical trials in the future which Ronan would be eligible for , but as of now there is nothing available.

Since we returned home from Spaulding , we have found out the cost of an adaptive car for him for his wheelchair is about $90,000 we have to also look into a stair lift for him to be able to get from one part of the house to the other , as well as getting him out to the car for medical appointments ,stairlifts has been estimated at about $30,000.

Ronan may look like he is not heavy , but carrying him downstairs is getting more difficult for Duane and unfortunately insurance does not cover either of these items and they are just two items that we cannot realistically afford .

I know it’s a stretch to ask for such an amount , but with having been Ronan’s full time mom and carer at home myself for the last 17 years and being a single income family with Duane working and allowing me to stay home with Ronan, these items are unfortunately way above our budget for obvious reasons , which is why we have decided to set up this GoFundMe .

But I do know that these are two items that Ronan will need well into his future, as we don’t know what is ahead and circumstances could change again for him with this COL4A1 mutation, so we are asking you guys for help , please feel free to share it with anyone that you know, that could help us within your communities. We appreciate any help and rest assured , every penny will go towards benefiting Ronan

Thanking you ,

The Clancy family ( Liz, Duane, Saoirse and Ronan )