Raising Funds For Our Daughter to Access Life Changing Intensive Therapies

In September 2022, our beautiful daughter Sophia entered the world. After a healthy pregnancy with no complications our joy turned into fear as we learnt that Sophia was incredibly unwell.

Sophia spent her first weeks in the neonatal unit, enduring countless tests without a diagnosis. Gradually, doctors uncovered a series of complex conditions: Pierre Robin Sequence, an Airway Obstruction, Cleft Palate, Duplex Kidney, two openings in her Heart, Clinodactyly, Hypotonia, and most recently Epilepsy.

At just three months old, Sophia stopped breathing at home and had to be resuscitated. It was a moment that changed everything for us as a family. By six months, Sophia was struggling to meet developmental milestones, and we knew something more was affecting her progress.

In May 2023, an MRI revealed that Sophia had Neuronal Migration Disorder, a rare condition where nerve cells in her brain did not migrate to their proper place during development in the womb. From this new finding Genetic testing confirmed that Sophia has PVNH7, a mutation of the NEDD4L gene. She is one of only seven people in the world known to have this condition, making her truly extraordinary.

Later that year, Sophia underwent cleft palate surgery. While the repair was successful, complications with her airway meant that she had to be admitted into critical care and spent a further four weeks on the long term ventilation ward. She now requires CPAP ventilation during sleep.

Most recently, Sophia was diagnosed with Neuromuscular Scoliosis, a result of her low muscle tone and the difficulty controlling the muscles that support her spine.

Despite her rare and complex challenges, Sophia is the most determined little girl. She works tirelessly to sit, stand, and one day, walk independently. But for Sophia to reach her full potential, she needs early and intensive intervention—something that the NHS, with its limited resources, simply cannot provide.

We were told very early on by doctors and Neurologists about the importance of early intervention in terms of therapy and how it is critical to enhancing Sophia's quality of life and maximising developmental potential.

Sophia attends private therapies each week which are incredibly costly. These include Dynamic Movement Intervention therapy, Movement Therapy, Conductive Education, Hyperbaric Oxygen Therapy, and Red Light Therapy. These treatments have already made a big difference. Sophia is achieving milestones we could never have imagined, and her spirit inspires us every day.

All of these therapies have the potential to regenerate neuron’s in her brain and transform her quality of life. We are also planning intensive treatments to strengthen her muscles and improve her mobility.

Private therapy costs are overwhelming but we would do absolutely anything to give Sophia the best chance at a brighter, more independent future.

This is where we need your support.

By donating, you can help Sophia access the care and therapies she desperately needs. Every contribution, no matter the size, gives Sophia the chance to thrive.

Together, we can make the impossible, possible.

Thank you for believing in Sophia and supporting her journey, it means more to us as a family than you will ever imagine.

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.