“There is always hope and our children are worth the fight.”
Grace Ava Williams, Trisomy 18, Slough, Berks, England, 11/23/2012 – 04/25/2013
Grace was born on November 23, 2012 and was diagnosed with Trisomy 18. We were told that Grace wouldn’t survive past 2 weeks and she will be 17 weeks this coming Friday. Grace’s major problem is her heart and has a large VSD, PDA and narrowed valve but we are fighting for her heart surgery. Grace is a very happy, loving little girl and she is thriving despite what Doctors told us. We will be fighting for her as Grace is for us and although her development is slower than the average child, she is doing it and that is the most important thing.
November 27th, 2013 Update:
Our Beautiful Grace went to sleep on the April 25th 2013 but not before she changed our lives for the better. Grace was born on November 23rd 2012 with Full T18. We were told that Grace would not make it past 2 weeks and we had the most amazing 5 months and 2 days with her. Grace was a fighter from the minute she came into the world. She defied what Doctors told us and went on to prove them wrong in many ways. Grace was born with 2 holes in her heart, one which closed itself and the large VSD which was beginning to close. Grace had lower set ears but her hearing and her sight were both fine. Grace needed physiotherapy as her muscle tone was weak but her exercises were beginning to pay off. Grace weighed in at 3lb 3 but was stronger than anyone gave her credit for. We were told Grace would never smile and she laughed a lot. We were told she would never open her hands and she used to grab my hair all the time. We were told that she would not put on weight and she made it to a chubby 6lb. We were told she would never feed orally, we had her on a bottle from 8 weeks old. My point is that your child is capable of a lot more than people think and it is the will of your child and you as parents that makes the difference and not what doctors tell you. You have to remember that Doctors are learning everyday too just as we are. They say that God only gives us things that we can deal with. I am a firm believer that the child picks the parents and they do so because we are strong and we can make a difference. Grace may have done things at a slower rate than your ‘healthy’ children but she still did them. Life will never be the same without Grace and everyday is a struggle but she will always be our eldest child and the one who taught us the most. Grace went to sleep as she caught a virus which she was unable to fight. This was not down to her but the medical negligence of the NHS is the UK. Had Grace been lucky enough to have a Doctor that cared enough to educate themselves about T18 and understand what our children are able to accomplish with the intervention of surgery etc then i have no doubt she would be here today. Don’t let doctors take away your hope. There is always hope and our children are worth the fight.
Laura Jennifer Blount