Meet Phoebe, born on the 20th of February, full term, after a smooth pregnancy.

Phoebe’s arrival into the world was a joyous occasion, but it quickly became apparent that she was struggling with feeding. We were reassured that this would resolve itself, but as the weeks went on, her feeding difficulties persisted. Phoebe was admitted to hospital and fitted with an NG tube because she was dehydrated and losing too much weight. During this time, we were supported by the infant feeding team and speech and language therapists who helped with her feeding. Phoebe was started on reflux medication and sent home.

As time passed, Phoebe’s weight gain remained steady but her physical development wasn’t progressing as expected. She struggled with head control, was unable to roll over, and couldn’t sit up. Despite these challenges, Phoebe was always very content, happiest when lying flat in her pram.

As a mother, I trusted my instincts and continued raising my concerns. While Phoebe’s weight improved, her physical skills remained behind. There were discussions about cerebral palsy, but an MRI couldn’t be done until Phoebe turned 18 months old. Instead, the decision was made to test for genetic conditions linked to her feeding difficulties.

Then, just one week before Christmas, I received the life-changing news that Phoebe had been diagnosed with Angelman Syndrome—a rare genetic condition that affects 1 in 15,000 births. This syndrome results from a loss of function in the UBE3A gene on the 15th chromosome. Some of the main characteristics of Angelman Syndrome include developmental delays, loss of speech, epilepsy, lack of sleep, gastrointestinal issues, and balance and movement problems. Despite these challenges, most individuals with Angelman Syndrome maintain a bright, happy, and smiling demeanor.

I was left with many questions: Would Phoebe walk? Would she talk? The responses I received were full of uncertainty. I was quickly told of the things Phoebe would likely never be able to do, but very little was said about what she could achieve. I chose to focus on hope and began researching therapies and specialist equipment that could give Phoebe the best chance at living as independently as possible and reaching her full potential.

It soon became clear that the NHS alone couldn’t provide the level of therapy and equipment Phoebe needed. In fact, Phoebe is currently only entitled to 8 hours of physiotherapy a YEAR—a stark contrast to the amount of care she requires.

As a solo parent to Phoebe and my 3-year-old son, this additional support comes at a cost that I cannot afford on my own. However, Phoebe has already begun to show the tremendous benefits of the therapies she’s receiving.

Phoebe has made great strides in her development. She can now maintain good head control, roll from left to right, and coordinate her arms and hands, which has allowed her to play and begin to develop self-feeding skills. She recently surprised us all by sitting up unaided for short periods—HURRAY!

Phoebe is currently under the care of:

Consultant

Occupational Therapist

Physiotherapist (NHS & Private)

Speech and Language Therapist

Wheelchair Services

Orthotics

Phoebe attends weekly private physiotherapy and hydrotherapy sessions, totaling £600 per month.

We are also looking into other vital therapies and specialist equipment, including spinal stimulation, an E-stim machine, communication devices, a safety bed, specialist car seat, and walking aids.

Each additional therapy session and piece of specialist equipment funded by your generous donations is life-changing for Phoebe—and for all of us as a family.

Phoebe has the most infectious smile and the ability to brighten any room. She teaches us every day how to appreciate the simple things in life and brings us immeasurable joy.

Thank you to everyone who has supported us so far and helped raise awareness for Angelman Syndrome.

Please follow Phoebe’s journey on Instagram at @phenomenal.miss.phoebe.

With love,

Emily x

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.