Hi

I am looking for your help for special cause close to my heart.

I am going to run 121 miles in April in aid of Down Syndrome Centre, and Down Syndrome Meath/Louth branch and looking for you all to join in… 121 miles or 121km or 12.1km or whatever you are capable of doing. On June the 4th I am going to run the mini marathon with the fabulous Antoinette, Claire Jane and Mairead 💕

Lots of people are asking why 121 miles. At first I was going to do 100miles. Since Down's syndrome is also called trisomy 21 or T21. I decided 121 miles would fit appropriate.

Let me tell you for who and why

I’m doing this to raise vital finances for The Down Syndrome Centre, and the Down Syndrome Meath/Louth branch.

October 11th 2021 our beautiful son Jake was born with Down Syndrome. Our worlds changed dramatically. At birth we found out Jake had Down Syndrome. While trying to deal andprocess everything. We also learned in the hospital that we will have to battle to get the best services and therapies that Jake deserves his whole live. Google was my best friend in the hospital, where it made me aware the HSE support was threadbare, that there were over 700 vacant posts in the Children’s Disability Network Team. Not one of them fully staffed 😞. From that day, we realised it is going to be a battle. It’s disappointing and sad that my biggest battle now is to get basic services and essential therapies that are needed to help Jake reach his full potential. In the hospital, within the first 24 hours we were told that Early intervention is vital and when missed childrens’ development will be limited and thus preventing them from reaching his full potential. From hearing this Ed and I decided we would do what ever we could to do to give Jake and everyone else with Down Syndrome the

best chance possible..

What we would love for all our friends and family and community to walk, run or crawl some miles with smiles. Grab a friend and get out and enjoy the chats. Walk,talk, laugh and SMILE. These simple things, that we all take for granted. Something that Jake will have to work really hard to do for the rest of his life, to reach each milestone….

Jake has brought so much love, fun and smiles to our family. We look forward to seeing him work really hard and reaching his full potential. He is loved and adored by us all🥰 Thank you to Kidology Dunboyne for saying within the first week that nothing changes on their part wirh childcare no matter wha health conditions. A thank you to the Dunboyne Athletics Club and Dunboyne GAA saying about it won’t be long till he is training there, making us all excited about his future.

I was always aware of the fantastic work Down Syndrome Center provided but never really fully understood what they provided and how it is funded. Their motto is “A place to Thrive” WHICH IT IS. It completely relies on public donations as it is not government funded.

The first day I went there, I was so nervous and emotional and scared of what it would be like. The minute I walked in the door with Jake I was greeted with an enthusiastic receptionist and Triona, everyone admiring my little boy. Giving me a real sense of pride and making me the proudest mammy alive and immediately making me feel at ease. The more I went I realized how lucky I am to have this amazing support. It really feels like home away from home. Jake who is one, and is already so happy ,content and always smiles there, and his determined personality shines through there. Much of his progress is down to all the therapies he receives there, speech & language, physiotherapy and occupational therapy. Jake loved going to Triona tots, when we were able to go. When Jake ended up in hospital last February, he was so sad and upset and crying nonstop. When I played the Triona tots playlist to him, he automatically started to relax and let the doctors and nurses do their jobs. Even now, 5 years too early, I cannot wait for Jake to do Easter/Summer camps there as I know it’s such a happy place. I know with the support form the Down Syndrome Centre Jake and his buddies’ future will be brighter. I know that without this centre I would be completely at a loss and Jake would not exceed, to the best of his ability in life.

I also would like to fundraise for the amazing Down Syndrome Meath/Louth branch who provide a variety of services and opportunities to families. Jake is a very lucky boy who gets a homeschool teacher bi-monthly. Fabulous Sarah comes to our home and is like a breath of fresh air when she arrives at the door. She lights up the room when she walks in and brings so much joy and love to Jake. Sarah is one of a kind, and we are so fortunate to have met her. The amount of activities, Lamh signs she does for Jake is incredible. Our whole family loves seeing her come. They offer so much well needed support to families.

Thank you for taking the time to visit my fundraising page on iDonate.ieI'm taking part in . I've chosen to fundraise for Down Syndrome Centre (Dublin) and Down Syndrome Louth Meath Branch . All funds raised here will go directly to this great cause.I hope you can help me by donating whatever you can. Simply click the Donate button above. All donations are processed securely.You can also share my page using Share options below. This is a great way to show your support.Many Thanks for your support.

Love,

Carol & Ed

Jake

Created by Carol Cullinane

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