On 2nd October 2017 I sat in Craigavon hospital with my mum and our beautiful little Rose, who at the time was only 18 months, meeting our peadritician after going through a number of referrals since Rose was 9 months old. We sat and chatted about my concerns with Rose and through the conversation he said that Rose had left side hemiplegia a mild form of cerebral palsy, that had been caused by her having a stroke while I was pregnant. Well as a parent that was like being hit with a ton of bricks. Suddenly left with numerous questions in your head, shaking knees and a lump in your throat. The rest of the appointment was a bit of a blur.
For the weeks and months following it involved more referrals to OT and physio, months of waiting for an MRI scan and left with lots of questions and still trying to get my head round that it is possible for a baby to have a stroke while in the womb. Rose continued to be the fighter and strong willed girl she is. Alongside the brilliant work with her physio and OT she started to build more strength in her left side and we celebrated many firsts, from crawling just after her first brithday to walking on high knees everywhere from 18 months and then just before her second birthday those first independent steps came and we couldn’t have been prouder.
As a parent though you just want everything to be perfect for your child and that’s where I struggled. I spent the first few months scrolling online looking for tips and advice and one day I came across HemiChat, a charity that specifically supports and unites families affected by hempeligia. Straight away I was connected to a network of people that could suddenly “get me” and could answer questions you didn’t want to ask others. HemiChat fund days out for families to unite together and meet other people travelling the same journey and we too were able to go on these.
The months went by from our first appointment and then the phone call came for Rose to go get her MRI. She had to be anaesthetised for the procedure to be carried out and it wasn’t the nicest day for family as we waited for it all to be over. The results showed what they expected, small holes in the right side of the brain, most likely caused by stroke that impact movement on the left side of the body. We could now confirm why our wee woman finds things harder and gets tired so easily.
Therefore in order to raise money to support this charity so that they can continue to support and unite families like ours and raise more awareness on hemiplegia I wanted to push myself physically. Rose is my inspiration as I watch her push herself physically everyday. So I came up with the crazy idea that I wanted to take on the 22 miles of the Mourne Wall.
On Saturday and Sunday 6th/7th July, Matthew, Melanie, Paul and I will take on the challenge. I am very thankful to these three people who are willing to come and do it with me. Please help make this challenge worthwhile by donating to this charity that has supported us so much already in our journey with Rose and help raise awareness of hemiplegia. If you even fancy coming and meeting us up Donard for the last stretch of the walk on the Sunday please PM me, I am sure we could do with some people with fresh energy by that stage.
Thank you so much for taking the time to read our story and we really appreciate your donation.
Many thanks,
Sarah and Rose
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