Our son Maddox was born at 34 weeks with an extremely rare blood disorder called Congenital Dyserythropoietic Anaemia Type 2 (CDA-2).

Since birth, his life has involved hospitals, procedures and regular blood transfusions. Yet despite everything he goes through, one of the hardest things for us as parents has been discovering just how little is known about his condition.

We want to change that.

We are raising £50,000 through the Congenital Anaemia Network (CAN) to fund dedicated researcher time focused specifically on CDA Type 2.

The immediate aim is to enable a haematology trainee/researcher to dedicate time each week to CDA-2 — identifying patients, gathering clinical information, improving participation in the national registry and beginning to build the evidence needed for further scientific and laboratory research.

For such a rare condition, simply having somebody whose dedicated job is to study it is a significant step forward.

This isn't about funding research solely for Maddox.

Maddox is the reason we're starting. Every person with CDA Type 2 is the reason we're doing it.

We want more data. More research. More understanding. And ultimately, more treatment options for children like Maddox and families around the world.

£50,000 can start that journey.

Because rare still matters.

Keep going, Maddox. ❤️

Love,

Ayla, Mammy & Daddy x