Fighting Finlay is continuing to defy all the odds
A schoolboy from Stirling who is battling a very rare genetic disorder has been described as a “oneoff” for living longer than anyone else with the condition.
Medical marvel Finlay Duthie has battled through illness and a kidney transplant, yet still attends primary school.
The 11-year-old suffers from HUPRA Syndrome — so rare it was only identified by medics in 2010 and affects less than one in a million.
Initially discovered in three Palestinian tots from the same village close to Jerusalem just a decade ago, the infants later died.
But Finlay, who was given a kidney from dad Ross when he reached six, continues to defy the odds.
Speaking from the family home in David Avenue, mum Jennifer told the Observer: “The condition is very, very rare and very complex. The children they discovered it in only lived to two or three. My son is now 11-and-a-half.
“Every cell in his body is affected, the cell battery, or the mitochondria have mutated, so essentially it means the cells can’t charge properly.”
“It’s a really serious thing. He is the only child with the condition who has reached this age. He’s a one-off.”
The disease, technically known as HyperUricemia, Pulmonary hypertension, Renal failure in infancy and Alkalosis (HUPRA) causes problems including deterioration of the body’s highest energy-consuming organs.
It is why Finlay, who attends Castleview Primary, needed a kidney transplant at such a young age after his parents were forced to give him dialysis at home every night when his organs deteriorated early.
Despite the setback, Finlay, who also has autism and a developmental delay related to the illness, has battled on.
Jennifer, who works as a staff nurse, added: “He has lots of health problems and suffers from a very low immune system. He has had sepsis twice, pneumonia twice and also developed a spontaneous bleeding condition where he was
The children they have discovered this disorder in have only lived to two or three... Finlay is 11 and a half
covered in bruises and had blood running from his mouth even.
“He can become very ill very quickly and in the future we know he will suffer from heart problems, epilepsy and diabetes.”
And the family now face an agonising wait to confirm whether sibling 14-monthold Harrison has any trace of the illness.
Jennifer continued: “We had the baby last year and we are waiting on his genetic results, we only found out after our second son was born.
“He is not showing any signs at the moment and we have been told the chances of him having it are very rare.”
Finlay, who has a developmental age of three, has benefitted from sensory play which is included in his tailored curriculum at the primary school he attends in Raploch.
And now Jennifer is ready to set up a sensory class for tots in the area to pass on the benefits she says her son has gained.
The 36-year-old added:
“We are really lucky that Finlay has been given the go-ahead to stay on at his primary school for another year. They are absolutely brilliant there and he does a lot of sensory play.
“I took Finlay to a nursery where they do sensory sessions and then discovered that there was nowhere else to go once the children turn one, so I felt the benefits were so great that I wanted to continue.”
Jennifer and husband Ross have dedicated a lot of time to exploring the benefits of sensory play for youngsters and even attended courses with specialist practitioners from the US when they found out their son could benefit.
She added: “When Finlay was very ill, we were lucky to get some money from a charity that helped towards converting our garage to provide a sensory playroom for Finlay. We went on courses ourselves as well.
“Sensory play is something that I’m really passionate about. When we first started it with Finlay, we could really see the benefits and got quite excited about it. It helped him so much and he got amazing benefits from it.
“There are benefits for all children but in Finlay’s case, it makes him calm enough to play and communicate. For other children, sensory play offers a lot of benefits — it helps with motor skills and it’s sociable, they can all take part in the class together.”
Jennifer is set to create Stirling’s first sensory play class for toddlers aged between one and three years.
The classes will take place in two sessions on Thursdays and Fridays at the accessible St Ninians Old Parish Church from February.
Children with additional needs who are older than three and who would benefit from the sessions will also be able to attend.