Hope for Ella

From early on, we knew Ella needed extra support. Genetic testing was carried out during pregnancy, although the results came back clear. Once she was born, doctors suspected dwarfism, and because she was unable to establish oral feeding, further genetic testing was carried out.

Ella was then diagnosed with an extremely rare gene condition — so rare that there are only around 24 known cases worldwide. This means there is very little information available, and much of her future remains uncertain. It has been an emotional rollercoaster for our family, but we are determined to give her the very best support we can.

She spent the first 7 weeks of her life in NICU and was tube fed for 6 and a half months. During this time, she showed incredible strength and resilience.

More recently, we experienced a frightening emergency where we believed she was having a seizure. She was blue-lighted to hospital, where it was confirmed she had suffered a febrile seizure alongside a week-long battle with bronchitis. At one point, her condition deteriorated so much that plans were being made to transfer her to Great Ormond Street Hospital and place her on a breathing machine.

Thankfully, she began to turn a corner, and a consultant believed in her progress and continued to delay the transfer, something we will always be grateful for as this could have set her back months due to her Low Muscle Tone.

After a week in hospital with bronchitis, she made an important step forward and began taking her bottles orally a huge milestone for her.

However, she still struggles significantly with weight gain. At 9 months old, she currently weighs just 4.3kg. Despite ongoing NHS involvement, we have not been able to get clear answers as to why, and we have had to seek private testing and support in the hope of understanding and improving her growth.

Due to how fragile she is, even basic procedures can be extremely challenging. She has no visible veins, and it took five anesthetists to successfully insert a cannula.

Despite everything she has been through, she continues to fight and show determination every single day.

We are actively involved in all of her therapies and follow professional guidance closely, but the limited availability of NHS resources means we have had to fund additional private therapies ourselves.

Early intervention is critical for children with her condition. The therapies she receives now can have a lifelong impact on her mobility, communication, independence, and quality of life.

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.