Mother of toddler facing major surgery “overwhelmed” by response to fundraiser

A CLARE mother whose daughter was born with a rare combination of serious birth defects has been “overwhelmed” with the response to a fundraising drive launched this week.
Little Sarah Summerly has been defying the odds since being born on June 25, 2019 with OEIS complex, resulting in her liver, intestines and bladder developing outside of her body.
The 18 month old who lives in Ennis with her mother Michelle, father Ger, brother Tony and sister Rosemary also has a form of Spina Bifida.
With plans for two major surgeries in the UK later this year and the need to adapt their home to make it wheelchair accessible, family friend Padraigh Sutton set up a GoFundMe campaign. Donations to the Support Sarah Summerly campaign can be made at https://ie.gofundme.com/f/29eev2rag0. The campaign has been running since Monday, and already it has exceeded expectations with donations flooding in from people touched by Sarah’s story.
Michelle recalled that while pregnant with Sarah she was told “there was no life, no hope, no nothing” for her daughter.
“At that stage I was, if I get five minutes with the girl, that’s all I want. As the weeks went on, I was asking if there were any specialists in this area, if there was any hope. Sarah’s urologist Dr Cascio came out of Crumlin into Holles Street to meet with us and he said, ‘actually I have dealt with one or two of these kids in Italy and if she is born OK, there is actually life and hope for her’. My whole pregnancy changed, that was the best news I’d ever heard.”
Sarah was born in Holles Street, and right from the start she amazed everybody with her fighting spirit. “Sarah was born better than they expected, she was breathing on her own. They wrapped her up and transferred her to Temple Street and then we went to Crumlin. She really has defied the odds, she surprised everyone with how good she was and even to this day she’s still a real fighter. At the start they thought she wouldn’t breath, then they thought she wouldn’t eat, she’s totally eating on her own. She has really being defying the odds.”
Having beaten the odds and survived, the aim for Sarah has now shifted to improving her quality of life and providing a higher level of physical and social independence.
In order to achieve these goals  Sarah will undergo multiple reconstructive surgeries at different stages throughout her life. As the surgical repair is so challenging, it requires teams of doctors with specialised international expertise.
Sarah will have two major surgeries this year in the United Kingdom. The first surgery is in February 2021 will take place in the Royal Manchester Children’s hospital where they will break open Sarah’s pelvis, place her liver, bladder and intestines inside her body and then complete whatever additional reconstructive surgery they can. The surgery will take up to fifteen hours and will result in hospital admission and intensive care for eight to ten weeks.
The second surgery is planned for later in the year in Great Ormond Street children’s hospital in London. This surgery will address the damage to Sarah’s spine.
The second surgery presents significant risk, but it will give Sarah the best chance at sitting unaided and developing and growing.
Michelle has been blown away by the number of people who have given their support since the fundraiser was launched. “I’m overwhelmed by the whole lot of it, we weren’t expecting this at all. We really appreciate Padraigh who came up with the idea because he knew we were worried about the cost of trying to live in the UK. And also, because she’s developmentally normal above the waist, we want to give her the best outlook in life as possible. Part of that is making sure she can get around our house, so we’re trying to adapt it to make it more friendly for us so she can mingle with our other kids and get around.
“I’m just so grateful that she has done 100 times better than we were told originally, she’s doing really, really good and we’re just so grateful for that and for the help that we have got from family and friends and the donations which have come in which have been overwhelming.”
Padraigh who initiated the online fundraiser said, “Sarah is lucky she survived, is unable to walk and requires intense care. She is an amazing child that has overcome so much in a short time.”
He explained that Michelle and Ger’s stay with Sarah in the UK for her surgeries, “obviously brings overwhelming financial challenges”. He added, “Sarah will be a lifetime wheelchair user and it is planned to provide her with a wheelchair suitable to her needs towards the end of 2021. With this in mind Sarah’s home will be adapted to make it wheelchair accessible. This will include constructing a room suitable to Sarah’s needs. This room will contain a wet room and wash facilities. It’s yet another challenge that face her Mom and Dad.
“Family, friends, colleagues and the wider community want to show the Summerlys we have their backs. The challenges they face are immense and reducing the financial worries and helping them focus on their amazing daughter is what this project is all about.”