independent

Tuesday 21 May 2019

Mary Kate fundraiser hailed as a great success

Trisha Drake
Trisha Drake

MARIA HERLIHY

A FUNDRAISER which was held in Millstreet and which helped bring experts and health professionals from all over the world was hailed as a great success.

Trisha Drake's daughter, eight year-old, Mary Kate has 22q11.2, which is a rare congenital abnormality which has no known cause. It is also known as DiGeorge Syndrome and it occurs in approximately 1 in every 2,000 births.

The fundraiser raised €5,813 where a 1970s and 1980s disco was held at the Wallis Arms in Millstreet. She sincerely thanked everyone who put their shoulder to the wheel to make it a fantastic success.

Mary Kate was not diagnosed until she was four years-old, where she noticed that her little daughter had numerous difficulties with feeding and suffered from reflux, and by the time she was two years-old, she still wasn't walking and her speech was not progressing. Neither Trisha's husband, Jim nor their son, Dan has it.

With the money which was raised meant, the people of Millstreet and Rathcoole, where the couple live, were able to support the conference, which was held in July in Dublin. Families from throughout Ireland attended as did parents and children from France, Australia, New Zealand, Canada and Poland.

Trisha told The Corkman that the medical experts were from Geneva, America, Israel as well as Irish academics.

"The four-day conference was an outstanding success. As a parent, there were aspects of it which I thought I knew everything about 22q11 but I did not. There were great one on one consultations as well as smaller groups. It was amazing to have so many experts from around the world in one room, where everyone was sharing information and their own stories," said Trisha.

She said discussions also centred around Parkinson's as well as educational structures which can be put in place for children and young adults with 22q.

Mary Kate can tire easily and she is a pupil of St Brendan's NS in Rathcoole.

There are over 180 congenital abnormalities associated with the deletion of the 22nd chromosome - which include complex heart defects, difficulties with metabolising calcium, poor immune system to reflux as well as a palate problem, which may cause speech difficulties.

At the Gala dinner, she said how a young girl from America, Tessa Koller who has 22q has gone out to overcome many obstacles and has become a fashion designer. At the Gala dinner, children with 22q modelled her clothes. A top fashion photographer, Rick Guidotti also took participants photographs. Another young Irish woman, Aine Lawlor, who is in her 30s, plays the fiddle and does dancing also took part in the fashion show.

"Having 22q doesn't have to mean it's the end of the world. What this conference gave everyone was fantastic information and a place where everyone could bond," she said.

She sincerely thanked Billy at the Wallis Arms Hotel, as well as Millstreet School including Barry Grazer. Orla O'Connor and students at Rathcoole NS as well as Millstreet Credit Union and the numerous ticket sellers.

Corkman

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