10-year-old Hailie from Kildare recently had her wish for a laptop granted! Here, Mum Sirlyn shares their story.
“Hailie has a rare spontaneous gene mutation called ACTA2 MSMDS (multisystemic smooth muscle disorder syndrome) and she is the only known person in Ireland with this gene variant. She had health issues pretty much from birth but unfortunately, she was only diagnosed with the ACTA2 R179H gene mutation in the summer of 2020.
Hailie never seemed well since she was born. She had rapid breathing, nasal flaring, grunting, chest recession, sleeping all the time, poor feeding etc. By the time she was 3 weeks old she was in heart failure. She had a 4-month hospital admission and emergency open heart surgery for heart defects. At some point in her early life, she also had a stroke, and she is high risk for strokes and aneurysms. She had several procedures in the past 10 years – open heart surgery, an open lung biopsy, cardiac catheterisations, MRIs, CT scans, x-rays etc.
Hailie's health is stable, but she has regular check-ups with cardiology, respiratory, neurology, ophthalmology, and other consultants, and is likely to need a heart surgery for an aneurysm in the near future. She is taking several medications to reduce risk of strokes, to slow down aneurysm progression, and for lung issues.
Due to the rarity of her condition, I am in contact with a Texas hospital where they do research and know most about it. My amazing GP has said he can send us to France to a specialist so hopefully that can happen sometime in the future.
Her condition means she is advised not to play contact or competitive sports, so that her heart rate and blood pressure don’t get too high. At times she is very frustrated that she can't do things other kids her age can. As a mother it is hard to see as I want her to have quality of life, but then I want to keep her safe enough so sometimes I just weigh the risks. I'm sure any parent with a child who has life-threatening condition struggles and has good and bad days. I was very scared at the time of diagnosis of losing her, and Hailie has struggled more recently with lockdown and not seeing her friends and having normal life.
I had heard about Make-A-Wish, but I wasn't sure if Hailie was eligible. My friend whose son’s wish was granted suggested applying for it. Hailie originally had another wish – to go to meet her favourite TV show stars. But unfortunately, we couldn't go in 2019 and now due to Covid it seemed impossible to go away anytime soon, so we brainstormed and came up with the laptop. She would use it for playing games, to help with her school work, and to stay in touch with friends. As the laptop is very practical, she will always remember the story and experience. There are less fights with her younger sister over screens at home now!
I received the packet, just before Hailie arrived from school. Even though I had kept the wish a surprise for her, she knew what it was as soon as I told her. Hailie was amazed that people are so generous in helping to fulfil wishes for sick children. I was also overwhelmed with people's kindness. It was obviously a very positive experience. Hailie talks about Make-A-Wish to her friends, and everybody is amazed to hear the story.
Thank you to Make-A-Wish and to all who made it possible. We are forever grateful.”
Hailie’s wish was only possible thanks to the support of the general public. Unfortunately, due to COVID-19 we are entering another year of our fundraising being massively impacted. Now more than ever Make-A-Wish Ireland needs your help.
