Trust in Ted

£18,580 of £25,000 goal

Raised by 308 people in 6 months
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!
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Exciting news!!! We are Philadelphia ready!

Teddy has his first appointment to begin the drug trial of Baracitinib at The children’s hospital of Philadelphia 26th August! We are over the moon and can’t believe it’s happening! We will need to return to Philly every 6 months for bloods, monitoring & to collect the drug. (You can see above we have been busy already having lots of blood tests already in order to be able to start the trial. Teddy smiling through it!)

There’s more... He is beginning his 3 week of intensive therapy at the NAPA Centre in September. This is an extremely amazing place and Ted is going to be such a superstar there we just can’t wait to show you!

He has had a challenging journey with his diagnosis but we can’t help to feel so lucky now to have these opportunities! We would not have been able to do this without the generosity of donations so again we would like to say the biggest thank you!

As you can imagine these trips have already taken a great amount of the fundraising money so we know it is so important in order to continue with this journey to help Teddy that we keep the fundraising going! Any donations we are so grateful of and any more fundraising ideas help we would love to hear from you!

We are so looking forward to updating you with his journey and progress! We will update you very soon hopefully while we are in the U.S!

Lots of love Teddy’s Mum & Dad xxx
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The continued support we have recieved is phenomenal, we are so grateful.

The opportunities you have given our family and Teddy, we will never be able to thank you all enough!

After our first visit to America - Children's Hospitals Of Philadelphia, we have returned with key information to help teddy continue to grow and ensure he stays healthy. We now know common things to look out for and the regular checks required to ensure this.

We also met other children with the same condition as Teddy, as can be seen in the photo attached to this update. Being able to speak with parents on the same level, about the little wins we have, about the struggles, about life with a special needs child was a real blessing and we've created friendships which will hopefully continue on our journey!

Thankyou all ❤.... next trip is Boston (There may be a Philadelphia trip snuck in before... but thats another update.)
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We just wanted to say a huge thank you to everyone for the overwhelming support that has been shown to Teddy's fundraiser and us as a family. We have been truly moved by all of the kind messages, outpouring of love and donations from both our family and friends as well as perfect strangers. When we set up this Go Fund Me it was in response to a small group of people asking how they could help to support us and we honestly were not expecting such a quick and big response to his story.

Following on from recent discussions with specialists in the US we're moving forward with the planning for Teddy's treatment, this includes a visit to The Children’s Hospital of Philadelphia in June where he will hopefully be seen by a team of world leading experts, who are leading the research into a future clinical trial that we hope Teddy will be on. We have also registered for his intensive therapy programme that’s either going to be in Boston or LA depending what dates are available first. All of this is going to come at a significant cost which will include the actual treatments, flights, accommodation, specialist insurance etc. We don't have medical insurance in the US, so this fundraiser will play a vital part in getting our baby boy the treatment he so desperately needs.

Unfortunately Teddy’s condition is very rare and complex, there is no cure and he will need this kind of specialist care ongoing for the rest of his life. Please know that any donations received will help give him the best chance in life and that we are so grateful for each and every contribution or share of his story.


Kelly, Rob and Teddy
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£18,580 of £25,000 goal

Raised by 308 people in 6 months
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