Cork parent Diane raising funds for hospital that provides 'amazing' care for daughter born with Muenke Syndrome

Great Irish Bake is back. The charitable event aims to get people whisking and kneading, all while raising money for Children’s Health Foundation. Pam Ryan speaks to Diane Higgins, parent to Sara, who regularly receives medical attention at Temple Street Children’s Hospital
Cork parent Diane raising funds for hospital that provides 'amazing' care for daughter born with Muenke Syndrome

Sarah was born with Muenke Syndrome, a very rare genetic disorder, whereby the plates of a child’s skull close early, “resulting in a deformed head shape and a skull which can’t grow in a regular way”, her mother Diane explained.

TOMORROW Diane Higgins will be selling delicious baked goodies at the Marina Market, while raising funds for Temple Street. This is Diane’s second annual charity bake sale for the children’s hospital. “I saw it on social media the week before, last year, and I knew I had to participate,” she said.

Last year, between the bake sale, the Facebook fundraiser and other donations, Diane and her cohort managed to raise a whopping €6,276.90.

“I just knew I had to do it and I’m glad I did. This year I knew it was coming and it has been all my eldest daughter has spoken of the last few weeks. It is great to be able to instil charity into my children, while raising money for a great cause.”

Supporting Children’s Health Foundation, and Temple Street in particular, is a cause very close to the hearts of Diane and her family. Diane’s daughter Sara was born with Muenke Syndrome, a very rare genetic disorder, whereby the plates of a child’s skull close early, “resulting in a deformed head shape and a skull which can’t grow in a regular way,” Diane explained.

“We had no idea until Sara was born that there were any issues for her, which came as a major shock for us, having had two children previously without a hitch, so we were not expecting it.

“The team in Temple Street have been amazing, both from a clinical perspective but also from a supportive perspective. We were assigned a social worker from the outset who was on hand to guide us through the new world of paediatric care.”

Muenke Syndrome has several presentations and thus implications for those with it, and can vary widely from person to person. Risks include hearing and/or sight loss, and developmental issues. Sara suffered most obviously with Craniosynostosis, the early fusing of the skull plates. Thus, her surgical journey began.

TREATMENT

Before turning six months old, Sara had distractors, or metal bars, inserted into her skull, which would allow space for her brain to grow. After her hospital recovery her intervention began, meaning her distractors were twisted and expanded by 1mm every day.

“Each week we travelled to Dublin for an x-ray to make sure it was all going well. You can see the difference in her skull from one x-ray to another.

“One week we went to Dublin to find out her brain had been leaking fluid, following a tear in the sack that surrounds her brain. That was scary but the doctors reassured us and we stopped the intervention until she was healed again.

Before turning six months old, Sara had distractors, or metal bars, inserted into her skull, which would allow space for her brain to grow. After her hospital recovery her intervention began, meaning her distractors were twisted and expanded by 1mm every day.
Before turning six months old, Sara had distractors, or metal bars, inserted into her skull, which would allow space for her brain to grow. After her hospital recovery her intervention began, meaning her distractors were twisted and expanded by 1mm every day.

“Another time we had to rush to A&E, but in Temple Street, and it was a long trip up when it’s so far away and you are worried about your baby.” 

After the metal bars were removed from Sara’s head, she had another corrective surgery and Diane delightedly tells us she has gone from strength to strength ever since.

“Although she has a long road ahead, she will be monitored along the way. It has been tough at times to process all of what has to come our way but we have seen such strength in Sara herself, as well as from the people around us and the health professionals we have dealt with.

“My husband is a firefighter, so has had to deal with his fair share of trauma at work and has become very good at coping with difficult situations but it’s very different when it’s your own daughter. He certainly has helped me to find things to help me cope. One of the ways we found helped most was to be open and honest about Sara and to talk about it.” Diane and her husband have also connected with other parents in similar situations and have even met some of them.

“It has been a great comfort to know that although rare, we are not alone.

KINDNESS

“We also found that getting involved with our communities and giving back helped us. Since Sara needed a blood transfusion, we have tried to encourage as many people as possible to give blood, and running the bake sale last year and this year was another way of feeling like we can do something to help and give back the kindness we received.

Diane Higgins
Diane Higgins

“The first year of Sara’s life involved going from one appointment to the next, both locally and in Dublin. Thankfully this has decreased a bit now, but no doubt, when she is due her next surgery, will increase again. It has had a major effect on our family in terms of simple things like me working for myself, so that I can attend appointments and relying on others for childcare of our other children when needed.

“Sara is just one of many children, and many families, who spend their time going to hospital appointments, with others not being as fortunate as us and having much longer stays in hospital. It is difficult for families and all we want as a family is the best for our daughter. Temple Street take amazing care of her and if there’s a piece of equipment or a technology out there that can give a child a better chance, or if there’s something a family needs to bring comfort in a difficult time, it is worth fundraising for.

“I have seen so much kindness from people and businesses who have donated money, prizes, helped out to bake or helped on the day to the cause that it gave me such faith in humanity. My fellow members of Network Cork and members of my daughter’s school’s parents’ association were brilliant last year and literally came out of the woodwork to help, as well as the Marina Market offering us the space both years, without which it wouldn’t happen.” 

Little Sara is due to receive her hearing aids for both ears this week, due to hearing loss because of her condition. Between that and the bake sale, it is a busy week for Sara and her family. Diane tells us baking has become a family affair.

“I love to bake and so do all of my children. I used to bake a lot more but now when we bake there’s four of us and it’s more of a project management exercise than anything else. If I take a bag of flour out of the press, they all start putting their aprons on.”

If you wish to get in touch with Diane to donate baked goods to sell, or a raffle prize, you can contact her via email at info@dianehiggins.ie or call 083 358 8482.

Financial donations, big or small, are welcome and can be made through the Facebook fundraising page, Sara’s fundraiser for Children’s Health Foundation Temple Street. The fundraising page can be found here.

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