Trust in Ted: The day your baby is born your whole world changes, the love you feel is undescribable and you can not wait to go through each amazing milestone with them, watching them grow. That was us the day our beautiful boy Teddy entered our world on the 25th September 17, our dreams had come true but we couldn’t be prepared for the future we were about to face. At 8 weeks old Teddy began to appear poorly. He was in and out of hospital and as the months passed he continued to not meet any developmental milestones. Eventually in May 2018, after months of uncertainty, our world came crashing down when we received the heartbreaking news that Teddy had been diagnosed with an extremely rare genetic condition called Aicardi-Goutières syndrome (AGS). Teddy is around 1 of 400 in the world known to be diagnosed with this. AGS is a neurological condition affecting his brain and immune system that has severe affects on his development, both physical and intellectual. Teddy is now a determined 16 month old with the most contagious smile and heart melting laugh. However, he still has poor head control, unable to sit, use purposeful movement with his arms and legs, therefore, unable to stand or walk. We know Teddy deserves more and we desperately want to give him the help he requires to truly thrive. Although Teddy has a team of NHS professionals who are working hard to support him, the treatment that he requires to help him reach his full potential will come at a significant cost. We want to take Teddy to a center in Boston, USA where he will initially take part in a 3 week therapy programme. He will receive intensive physio therapy, occupational and speech therapy. We are also planning to take him to The Children’s Hospital of Philadelphia where they have a specialist research center for his condition to see what help they can offer him such as possible drug trials. We will most likely be returning to these centers frequently for Teddy to get the ongoing help he needs. The cost of these vital trips are very expensive and without the generous help of others we will be unable to fund these ourselves. Any contributions to Teddy’s fund, however small, will give him the best chance of a better quality of life and as a family we want to thank you for helping us to help him. So please, Trust in Ted!
- Emma Monckton
Organizer and beneficiary