LITTLE Daisy McCormack O’Leary (4) doesn’t really know why she has to have her blood tested every four hours or why she has to have a special injection and a glucose drink to hand at all times.
It sounds like she has diabetes, but she doesn’t. The young Thomondgate girl has the exact opposite of diabetes, hyperinsulism, a condition which is very rare and more dangerous.
While diabetics don’t produce enough insulin, Daisy’s body produces too much and this has to be countered by powerful medication and careful monitoring on the part of her parents, Jenny and Aaron.
“We knew there was something wrong when she was born, but we didn’t know what. She had to be kept in hospital until we got a diagnosis from testing in Exeter,” Jenny told the Limerick Post.
“The condition is genetic. The day we brought her home was the happiest day of my life, but also the most terrifying. She needs constant monitoring.”
To add to the complications, the little girl has heart problems, skeletal difficulties, a compromised immune system, and had to be hospitalised for two weeks in January after suffering an anaphylactic shock.
But her parents are determined that Daisy’s condition “won’t define her. She goes swimming, does athletics and is starting Irish dancing. We wont let it hold her back.”
Daisy and her parents are supported by the Rare Ireland organisation, which Jenny says has been “incredible. When you’re child has a rare disease you can feel very isolated.”
“But even if they don’t have children or loved ones with your child’s particular condition, the Rare Ireland members will always listen and give advice if they can. Rare Ireland is a voice for voiceless people and a huge support to the people involved with them, in every way.”
Rare Ireland spokesperson Mary Campbell said that “as a charity, we support over 2000 children and young adults living with a rare condition in Ireland”.
“These children and young adults have very serious, often life threatening conditions. We are the only charity in Ireland set up to specifically help parents of children/adults living with a rare disease in Ireland.”.
Rare Ireland provides a safe space for parents to engage with other rare parents, acts as a contact point for families dealing with the same conditions, sends gift boxes to children with rare diseases during hospital stays, and subsidises therapies, equine therapy, and genetic counselling for members.
The charity is marking Rare Diseases Day (February 24) by hosting its annual ‘cold dip’ fundraiser on March 1.
More information is available on rareireland.ie.
