TRUST: The 'Let's help Alexis' trust has been set up to raise funds for Stephen and Teresa O'Mahony's four-year-old daughter Alexis to help with her care needs. Photo: Michelle Crean

By Michelle Crean

A new charitable trust has been set up this week to support a four-year-old Killarney girl who suffers from a rare condition.

A committee of five have launched the 'Let's help Alexis' fund online including a GoFundMe page which has so far raised almost €4,000 of their €50k goal to give Alexis a comfortable life as she grows older.

Currently her parents Steve and Teresa are 24 hour carers for the little girl who has a rare primary metabolic condition called Pyruvate Dehydrogenase Deficiency which has led to a brain abnormality called Ventriculomegaly as well as cerebral palsy, epilepsy, global developmental delay, double hip displacement, cortical visual impairment and sleeping difficulties. Some immediate supports include upgrading their small Seat Leon to a wheelchair accessible vehicle as she has outgrown her car seat making it difficult and uncomfortable for her on long journeys to Dublin for necessary appointments.

The committee is made up of five people who are not related to Alexis' parents and will make all the financial decisions independently of both Steve and Teresa to prioritise Alexis' needs.

"A few people suggested to us a few years ago to set it up," Steve told the Killarney Advertiser this week.
"The committee are planning a number of fundraisers and have set up the fundraising page. I'm delighted that it's independent of us. It's about what is in the best interest of Alexis and the committee will decide. We're very grateful to them for giving up their time."

  He explained that Alexis is now almost 15kgs and has outgrown her car seat and that as their car is compact it's a struggle to fit everything they need for the long trips to appointments in Dublin.

"She is getting big now and her car seat is too small. She has been sanctioned for a wheelchair but it won't be suitable for our car. She needs a van with a ramp for the wheelchair. Before you could stop and lift her out but it's harder now. Even stopping on the long trips she's now too heavy for the nappy changer when we take a break in places like Obama's and then there's health and safety - especially now. With a van we'd have the space for everything. She's on a special Ketogenic diet and food for 24 hours has to be made up the night before and brought with us. And then there's the medicine bags and change of clothes."

Funds raised would also go towards extra physio for her, he added.

"She's getting private and public physio but it would mean we can pay for more private sessions. We're also looking into therapeutic horse riding."

And with the physio, which is done at home, comes an increase in the cost of heating oil which is double what most people spend, he added.

"The trust will mean that Alexis will have everything she needs as she grows older. We just want to give her the best chance possible, not just for now but for the years ahead."   

He added that messages of support from all over have been pouring in since the committee launched the trust.

"You see the good in people. It lifts your spirits and it just shows that everybody in society is equal."

To make a donation to help the family go to GoFundMe: Let's Help Alexis and you can also search the same name on Facebook to find out more.