Meet Isla and Erik

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Their mums are running in the VHI Women’s Mini Marathon this year in aid of the Down Syndrome Centre

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EMMA’S STORY

Tel us about Isla…

“Isla is our little ray of sunshine, her cheeky smile is just contagious and her laugh is infectious. Isla also happens to have down syndrome and her extra chromosomes are very much part of who she is. Most days she rocks them but some days they hold her back. Isla will share similar challenges with her friends however they will develop at their own pace. She has just started walking and we are over the moon for her, she worked very hard to get to this point. Our hearts are in our mouth most of the time with all the falls but that’s all part of it. There is no stopping her now, she is one determined little girl.”

How does it feel being a team leader representing the Down Syndrome Centre at the VHI Women’s Mini Marathon this year?

“When I received the call I was so honoured to be asked and to be thought of. I have been very lucky to be part of a very supportive network of amazing mums through the Down Syndrome Centre and I am so pleased to be given the opportunity to give something back. Our family hope to continue to use the facilities of the centre so we need to safeguard this for Isla, her friends and for all new mums and dads in the future. If I can help to generate financial support for this it would be just amazing. Our children have had access to additional supports and therapies that they may have otherwise been waiting for, the Down Syndrome Centre allows our children the chance to shine.”

What made you want to take part in the marathon in the first place? Is this your first year taking part?

“This will be my sixth Mini Marathon and my second for the Down Syndrome Centre, being part of a team raising money for a charity makes it so rewarding. I really enjoy it, it's a brilliant day. We need people to join us, raising awareness for the centre and to drum up some well needed funds.”

How has the Down Syndrome Centre impacted your life and the lives of your family members, including Isla?

“The day we left the hospital with Isla we were so very happy but a little lost because we had so many questions. The responsibility of a new born is channelling but throw in some medical concerns and a diagnosis of a chromosomal abnormality and it’s overwhelming. It’s a blur really, your head is foggy with everything that’s going on, so being able to reach out to a centre without a referral is just the life line a family needs. The Down Syndrome Centre has created an environment that is welcoming and has numerous supports. It’s a place where everyone is welcome and the family room is a safe place to talk to other families.”

What have the past two (almost three) years taught you? Would you say your outlook on life has changed?

“So much has changed now; having children certainly changes your priorities anyway. Every parent worries about their child or children and I am no different. But having a child with additional needs can really isolate you; you are going through a journey that many people have not been on and it’s hard for you and those around you to know what to say and do. We had been given so much information about Isla’s diagnose, meaning we were no longer blissfully unaware, feeling loaded down with worry about what the future holds is so scary words can’t really describe it. We knew that whilst we had a lot to deal with, that we needed to be strong that we had to stay positive.

“I have a memory of Isla smiling five days post-surgery and I took her strength as a sign that she was going to be okay. The nurse did say it was probably the drugs that were making her smile, that comment broke the worry and made us all laugh but I knew then that Isla wasn’t sad she was doing just fine. Having Isla is so rewarding, yes we have faced some real challenging times and we have more to face but as a family we are coming out stronger as a result. Isla can break and mend your heart in the one day; she gives the best hugs and has a great personality. Like all toddlers, she tests boundaries and gets frustrated when she can’t do something especially if it something she can’t have yet wants. Looking back it has taken a while to get to this point, but time helps and her third birthday will be a big celebration! “

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JESSIE’S STORY

Tell us about Erik…

“Since Erik came into our lives, our family has changed in so many ways. It’s hard to remember life before he was born. Erik is the friendliest child I know and then some. He loves a smile on everyone’s face, so lots of laughter is present in our house. Erik is so smart, kind and loving - he is everyone’s biggest cheerleader. The day after Erik was born, we were told that Erik might have Down Syndrome. To me, he looked like the absolutely perfect baby I had always hoped for and that feeling has never changed.”

How does it feel being a team leader representing the Down Syndrome Centre at the VHI Women’s Mini Marathon this year?

“The Down Syndrome Centre has had such a big part in Erik’s life these past (almost!) two years. It feels good to be involved in a team that is so close to my heart and the hearts of so many of my family and friends. I know that my role in helping lead this year’s team will have a direct impact on Erik’s life and for me that makes all the difference. The Down Syndrome Centre has become like a home for us, and I am delighted to support a place that has been a source of support, love and community.”

What made you want to take part in the marathon in the first place? Is this your first year taking part?

“I’ve taken part in the Mini Marathon a good few times before, always with friends and family as a day out. I think the Mini Marathon itself is great craic! When I was approached this year to lead the DSC team, I accepted without hesitation as the centre has really been a crucial part of our lives this past year and a half. It felt right to step up and really take an active role in encouraging my friends and family to get involved and to fundraise for a place that means so much to our family.”

How has the Down Syndrome Centre impacted your life and the lives of your family members, including Erik?

“The Down Syndrome Centre has been a place of community and friendship for Erik and me since day one of walking through the doors. It’s been amazing to see how many friends Erik has made since linking up with the centre. Being able to share our experience with our parents has been such a gift - to know that you are not alone, that there is a wider community of people who share your experience is incredible. We need that community more than we realise sometimes. Erik has benefitted from the services at the Down Syndrome Centre in more than just a practical sense; he’s made real friends and, as a mom, I am so proud of all that he has achieved from our first day here to now.”

What have the past (almost) two years taught you? Would you say your outlook on life has changed?

“Erik has truly changed our lives in so many ways, it’s hard to put into words. From the moment Erik was born, he has been the child I always hoped for. With every big life transition, from birth, to first moments, there are emotions. In the early days, I think there was a lot of worry surrounding Erik’s future and the extra care and support he may need. But as time went on, Erik revealed to our family his many gifts. Our days are filled with laughter and lots of surprises. One of the biggest lessons he has taught our family is to take nothing for granted and the importance of gratitude. While the future is hard to think about, I have no doubt that with the support of the centre, Erik can achieve anything he puts his mind to. He has changed the way I look at life, all for the better. Through the big moments and everyday life, Erik has put things in perspective in a way no one else could. My biggest wish for him is happiness and health. Have those, and the rest falls into place.”

For more information on the Down Syndrome Centre see www.downsyndromecentre.ie or if you would like to take part in the 2019 VHI Women’s Mini Marathon visit www.vhiwomensminimarathon.ie

Woman's Way