Tommy and Grace's Adventure Fund

Thank you for visiting our GoFundMe page. We, in Scoil Chaitríona have set up this page to support our wonderful and much cherished teacher and friend Liz Ní Chléirigh, whose two gorgeous children Tommy and Grace have been diagnosed with a progressive, degenerative and life-limiting illness.

 

Tommy and Grace have Mitochondrial Disease. This is an extremely rare genetic condition with no known cure. It is caused by mutations in mitochondria, the tiny batteries in every cell of the body. They generate 90% of the energy that allows the cell to function. Put simply, the batteries in Tommy and Grace's cells are running out.

 

For Tommy and Grace, this means significant visual impairment, mobility issues, muscle weakness and fatigue. It also means that they spend a lot of time at medical appointments and therapies. For them, even a regular childhood illness like tummy bugs and colds can end in hospital admissions. This is the tough reality for the kids, our good friend Liz and her husband Kevin Dickson.

 

Despite this, and all the challenges they face, Tommy and Grace remain good-humoured and fun-loving and light up the lives of all around them. They love to play and go on adventures and, most of all, spend time with family and friends.

 

The story, in short...

 

Tommy and Grace live in Dublin with their mammy Liz and daddy Kevin.

 

Grace was an energetic, fun-loving, sometimes wild baby and developed normally, hitting all her milestones and winning the hearts of all around her.

 

Grace later developed a squint in her eye, and thanks to her loving, devoted parents, investigations began, of which there were plenty as more symptoms developed. These included issues surrounding her balance, fatigue, and, her much loved, contagious smile began to change and droop on one side.

 

After her battery of tests, including MRI’s, CT scans, blood tests and DNA tests, to name a few, Grace was diagnosed with a very rare mitochondrial disease on the 14th of December 2020. It’s a degenerative disease, there is no cure & it is life-limiting.

 

Since her diagnosis, Grace has been fitted with a leg brace and has been provided with a wheelchair. This gives her the ability, although limited, to go outside and enjoy the world around her. Unfortunately, Liz and Kevin really have to take each day as it comes. Some days will see Grace enjoying her youth with a big smile on her face, other days will see her bed laden as her body struggles to fight off common bugs, flus and colds.

 

Grace's older brother Tommy, a funny and kind, boy, full of life, did have some food allergies and intolerances - nothing to raise too much concern. He later developed coordination difficulties, which health professionals believed to be dyspraxia. Although symptoms between Tommy and Grace were different, tests sadly revealed that Tommy also has mitochondria disease.

 

There are no words to describe Liz and Kevin’s heartbreak upon hearing this news. They had, in this moment, become the parents of 2 children with mitochondrial disease out of a total of 3 known cases in Ireland. We salute and admire Liz and Kevin for finding the strength to continue to fight for their children and do what is best for them. But they need our help.

 

Tommy, due to a curvature of his spine, has been fitted with a back brace since his diagnosis. This is to prevent further curvature, and hopefully correct some curvature that has already developed. It helps a little that the family had the back brace painted to match Tommy’s favourite superhero, Ironman. A stark reminder of just how young these children are and what they have to face.

 

The road ahead is one that no family deserves. Sadly, we don't know how many years Liz and Kevin have with their two precious children. Our aim is to simply support them and give them the opportunity to enjoy all the many fun adventures that lie ahead. Your donation will simply open doors to new experiences that this family deserves, bringing laughter, smiles and fun into their lives.