Fulfilling Orlaith's Potential

Help Orlaith Reach Her Full Potential

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Orlaith is our beautiful little girl, who will be turning 2 in March 2024. She is strong-willed, determined, funny, sociable, and fills our world with light and love.

But Orlaith’s journey has been far from easy. At just 4 months old, we began to worry that something wasn’t quite right. She struggled with feeding, was difficult to hold, and wasn’t reaching out or holding toys like other babies her age. After months of tests, therapies, and appointments, we finally received a diagnosis at 18 months:

Orlaith has a genetic disorder caused by a rare mutation in a gene called PPP3CA, which plays a crucial role in how nerves communicate. This means her difficulties are likely to affect her movement, speech, and cognitive abilities. However, the condition is so rare that doctors have very little information—only 6 children worldwide have been studied, and all have faced significant neurodevelopmental challenges.

While this diagnosis was heartbreaking, Orlaith has amazed us every single day with her progress, strength, and determination. She is our teacher, reminding us to appreciate life’s small victories and live in the moment.

Why We Need Your Help

Orlaith has been attending private physiotherapy sessions for over a year now. These intensive therapy weeks, held once a month alongside her NHS sessions, have been life-changing. Every milestone she’s reached so far is a testament to the power of therapy:

At 12 months, she learned to pivot on her tummy.

At 14 months, she began sitting up on her own.

At 16 months, she started crawling.

At 17 months, she began pulling herself to stand.

At 19 months, she started cruising along furniture.

And at 21 months, she took her first independent steps.

We believe that these therapies are nothing short of magic, and her doctors agree that the more therapy she receives while she’s young, the better. Her brain’s plasticity at this age gives her the best chance to make incredible progress—before any potential seizures from her condition begin.

However, the cost of therapy is significant. Each intensive therapy week costs £400, and over the next five years, this could total around £25,000. While we’ve been self-funding until now, we need your help to continue giving Orlaith the best possible chance to fulfill her potential.

Your donation will go toward:

Physiotherapy to help Orlaith develop strength, coordination, and mobility.

Hydrotherapy, which helps her build muscle tone in a safe, supportive environment.

Speech and language therapy, to encourage her communication skills.

Other specialist therapies designed to support her unique needs.

Why Donate Through Tree of Hope?

We’ve chosen to fundraise through the Tree of Hope Charity, which ensures that all donations are used exclusively for Orlaith’s medical needs. This also makes your donation eligible for Gift Aid, adding an extra 25% at no extra cost to you.

How You Can Help

Your donation, no matter the size, will give Orlaith the chance to grow, learn, and gain independence. By contributing, you’re helping her take steps toward a brighter future—steps that we didn’t know would be possible just a few months ago.

If you’re unable to donate, we’d be so grateful if you could share Orlaith’s story far and wide. The more people who hear about her journey, the more support she’ll have.

Thank you from the bottom of our hearts for reading Orlaith’s story and for being part of her journey. Together, we can help her reach her full potential.

With love and gratitude,

Orlaith’s Family 💛

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.