You never expect to hear the words ‘life limiting’
By Mary Dennehy
A FUNDRAISING campaign to help make lots of fun memories for a young boy and his little sister has started, after both siblings were diagnosed with a rare degenerative disease.
Tommy (5) and his little sister Grace (4) Dickson were diagnosed with a rare Mitochondrial disorder within six months of each other - and are two of three known cases of this type of metabolic disease in Ireland.
Brother and sister Tommy and Grace sitting on logs
Mitochondrial disorders occur when the mitochondria, the ‘batteries’ of body cells, fail to produce enough energy for the cell or organ to function properly.
Speaking with The Echo this week from their Tallaght home, Tommy and Grace’s parents Liz and Kevin said there is currently no cure for the degenerative disease.
Grace was first diagnosed with the disorder in October 2020, after she experienced a sudden turn in her eye – followed by an occasional droop in her face and a change in her walk.
Tommy, who was initially believed to be showing signs of developmental co-ordination disorder dyspraxia, was last month diagnosed with the same mitochondrial disease as his little sister.
According to Liz, both Grace and Tommy presented with very different symptoms, but genetic testing confirmed they have the same disorder.
Tommy and Grace with their parents Liz and Kevin
“We can’t even explain the devastation, we couldn’t believe it,” Liz said.
“You never expect to hear the words ‘life limiting’ when you think of your own kids.
“It’s very hard to take in.
“This [particular Mitochondrial disease] is extremely rare as well, there’s three cases to the best of our knowledge in Ireland, and two of them are our kids.”
She added: “We have comfort in the fact, that there is normality with Tommy and Grace.
“They’re both going to Naionra, still going to their childminder, who they adore, still want to ring nanny and grandad in the evening, go to the park, the playground.
“They want to do all of the things kids want to do.
“They’re both really fun-loving kids.
“They’re clever and funny and really affectionate, and that does keep us going.”
Living in Riverview off the Kiltipper Road, fun-loving Tommy and Grace are about to go on even more adventures thanks to a campaign started by Kevin’s family.
Originally from Scotland, Kevin’s family in Glasgow started a GoFundMe page following Grace’s diagnosis – to help the family create fun memories.
The money raised will be used for fun trips and holidays for Tommy and Grace, with Lapland already booked.
To date the page has raised more than £39,000 (€43k).
“Despite restrictions, there’s been massive support from friends, family, neighbours, colleagues,” Liz said.
“People are dropping us dinners, sending us vouchers for food, delivering flowers…people have been very creative in how they support us.
“There’s days as well that we’ve been left really overwhelmed by the generosity of people [on the GoFundMe page], from people we know and strangers.”
When asked what difference the money will make to the young family, Liz said: “It has given us something to look forward to, allowed us to make a plan, arrange to go somewhere.
“It’s given us some light.
“We’re incredibly grateful for all the love and support that people have shown us over the past few months.
“Never in a million years did we expect this.”
Liz and Kevin also plan to make some small adaptations to the family home and create a space for Kevin’s family to stay when they visit.
“We don’t know what we need long-term, no one can tell us,” Liz said.
“We’ll take it as it comes.”
Liz and Kevin have thanked the team at Temple Street and the Children’s Hospital in Tallaght, where both Tommy and Grace are now patients.
The local hospital has arranged for the siblings to have joint appointments, which will reduce hospital visits for the young family – leaving more time for the creation of fun memories.
To learn more or to support the Dickson family visit Memories for Grace and Tommy on GoFundMe HERE.
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