One in 225 Million: Help Reeva’s Journey with Pitt-Hopkins

Hello, my name is Deborah and I’m the proud grandmother of a beautiful, bright, and brave little girl named Reeva.

Reeva is just one year old and has recently been diagnosed with a condition called Pitt-Hopkins Syndrome — an ultra-rare genetic disorder that affects her development, movement, communication, and many other parts of daily life. It’s estimated that only around 300 families worldwide are affected.

Developmental delays were noticed as early as 6 weeks old, and since then, Reeva has undergone — and continues to undergo — countless tests, assessments, and hospital visits. Although she goes through so much, she is still the happiest little soul, full of light, and she brightens up everyone’s day.

Pitt-Hopkins is so rare that there is very limited information and support available here in the UK, which makes navigating this journey even more difficult and isolating at times.

Her journey is just beginning, and the truth is — we don’t know what the future holds. What we do know is that Reeva needs a lot of support. She may benefit from specialist therapies, equipment, and resources to help her thrive and give her the best possible quality of life.

As a first-time mam, raising Reeva on her own while working full-time, Courtney is doing everything she possibly can to give her daughter the best life. Her love and dedication know no limits. Despite the challenges, she has been locally fundraising and organising small events — determined to open every possible door for Reeva’s future. Courtney is incredibly strong and independent, but this is one of those rare times when she truly needs support. The emotional and financial pressures of this journey are simply too much for one person to carry alone.

Courtney would also like to raise awareness and support other families who are navigating similar rare conditions, so no one feels alone in this journey.

I’m setting up this GoFundMe in aid of my daughter Courtney and my granddaughter Reeva, to help take some of the financial worries away during such a difficult and emotional time.

If you’re able to donate, share, or even just read Reeva’s story — thank you. Every act of kindness truly means the world.

From our hearts, thank you for standing with us. Reeva truly is one in 225 million — and she deserves the world.