Freddie’s Fantastic Feat: 100 Miles For Willow

Hello! My name is Freddie.

I’m 5 years old, and I live with my little brother George, my baby sister Millie, and my mum and dad. I love reptiles, going crabbing, and eating delicious food. I also love to ride my bike with my family, and we go for long rides together!

In 2021, I raised 520 pounds for TAPS research for cycling 100 miles!

I had another sister, Willow, who was Millie’s identical twin sister, but she passed due to pregnancy complications. We think of Willow a lot in our family, especially when we’re out on our bikes. She’s there in everything we see that’s beautiful – the beach, a sunset, and when we see the stars at night. Willow is an important part of my family, which is why I want to ride 100 miles to raise awareness of Twin Anemia Polycythemia Sequence (TAPS), and also raise money for research.

I would really love if you would help me raise money for TAPS research as I ride 100 miles across Cornwall, Devon and Essex!

Love

About TAPS Research

Willow’s family are just one of the many affected by TAPS across the world, and there is a really big problem with a lack of screening and information.

We need more research into TAPS, which is why Freddie wants to help support The TAPS Support Foundation fund a part-time researcher – so we can get more answers.

Follow his progress below!

Your Messages

Go Freddie Go! Amazing job. Keep those little legs strong with some nice treats! - Love Evie, Ted and Emma xx ... Go team Raj!! Well done! Love Chiara x ... You’re a diamond Freddie! Well done superstar !X Charlotte... Go Freddie! X – Sonia... Very proud of you Freddie. And always carrying Willow in our hearts. Granny and Grandpa xx .... Good luck Freddie. You've done amazingly well! I hope you're having lots of fun with all the cycling. Well done! – Rory ... Well done Freddie. Great achievement. You’ve inspired my five year old who has just learnt to ride her bike. Keep up the good work - your sister would be proud xx – Sarah .... Good luck Freddie, you little super star! Miss Mead ... Freddie you are an amazing little boy and a credit to your family, your little sister must be very proud of you. - Clare ... You are doing amazingly Freddie! For such a good cause, that’s close to all of your hearts. Willow – Toby and Max ... Well done Freddie, keep going! Thinking of you all lots this month x Claire ... Good luck Freddie. This is an amazing thing to do. I’m very proud of you. Love Mrs Monger.x... Well done Freddie and family!! – The Gray Family ... Go Freddie! What an amazing thing to be doing for your family. - The Brimbles xx ... Go Freddie, we are so proud of you xx – Beverly... Freddie. I love your drawing. You’ve done a magnificent distance on your bike. Well done x – Kriss...

This Is How Many Miles I’ve Gone So Far!

100
102

About The TAPS Support Foundation

We passionately support research into TAPS and raise funds for continuing research. We also provide resources for families affected by TAPS, in the hope of helping them understand their diagnosis and advocate for the appropriate care, before and after birth.

In 2021, our focus is on installing a part-time TAPS researcher into the LUMC in Leiden, the Netherlands, who leads the world on discoveries and research into TAPS. A dedicated researcher, even part-time, would mean that we can find answers about our rare disease faster, and give more families, just like Freddie’s, the best possible information and the latest research to support their TAPS diagnosis.

Our firm belief is in transparency on how we spend your donations, which is why we are volunteers. We don’t pay board members or directors, in order to keep our operational costs and overheads low, and publish our financial report each year.