A fundraising campaign has been launched in a bid to make life better for a little girl with a rare neurodevelopmental disorder, and for her family,
Five -year-old Ella Gonzalez-Bello has White-Sutton syndrome and is non-verbal, non-mobile and has issues with sight, hearing, eating and development. Ella also has epilepsy which has progressively worsened with the youngster suffering between 50 and 100 fits a day.
To increase the quality of life for Ella and also for mum Samantha, dad Christopher and big sister Mia, aged 8, family members created a fundraising page and hope to reach a £40,000 target towards home adaptations and equipment.
Saga worker Samantha and civil servant Christopher have had to take out a huge loan to make changes to their home in Margate. They are converting the living room into a bedroom for Ella and the dining room into a wet room and building an extension to replace the family living area.
The couple have taken on the financial burden because the amount available in grant money does not cover the cost.
Samantha said: “Disability Facilities Grants go to £30,000 and that has been at the same level since 1996.
“We have started building so we can move Ella into the living room which will be her bedroom and the dining room will become a wet room. That just leaves us the kitchen. We had to take out a massive loan so we can replace our living space. We are entitled to the grant but it is just a contribution for this.
“We don’t have a choice, Ella has to move downstairs and we can’t have a lift because of her seizures and also because it would be hugely expensive. Basically we have had to take out a small mortgage to build the extension.”
Equipment is also very costly. Some is provided but items like specialised car seats are not and these can cost £2,000.
Ella was born at QEQM Hospital on September 22 2017 and spent the first month of her life in the special baby care unit as she was not feeding so needed a tube.
Samantha said: “Miraculously she started (to feed) so we were discharged.”
During the next year there was little medical follow up but this changed when a yearly assessment showed Ella had not reached any expected milestones.
Samantha said: “She was being sick all the time and then was referred for speech and language therapy and swallow testing as she would aspirate and that made her sick.
“She got really unwell with a chest infection and there was a decision to tube (feed) her as they decided it was unsafe for her to swallow.
“I did feel like the tube might be a backward step but once she started it she began to thrive and grow and play and become who she was.”
By the time Ella was three she was sitting independently and able to move herself around a little but as her seizures got progressively worse her development stopped.
Samantha said: “Ella was having maybe three seizures a week. Now it is between 50 and 100 a day. It doesn’t leave much of her. They say every time you have a seizure it is like running a marathon. So now Ella will have a short burst of energy, a smile, pay attention to a toy and then she’ll have a seizure and be asleep for a few hours after. We are desperately trying to get control of it as there are different medications and diets, we are just waiting for referrals.”
Ella was not diagnosed with White-Sutton syndrome until 2021 due to the pandemic causing delays in the genetic testing by the team at St Thomas’ Hospital in London.
The condition is extremely rare with just some 70 diagnoses (as of 2021). It is caused by a mutation of the POGZ gene and is characterised by autism and developmental delay and/or intellectual disability, as well as a characteristic facial profile.
Children may also have speech and language delay, motor difficulties, vision problems, hearing loss, seizures, gastrointestinal problems, obesity, anxiety, and attentional problems.
Ella is now under the care of several teams at Evelina Children’s Hospital, QEQM and Canterbury and Green Banks and has regular checks for her feeding button (a small feeding tube which is inserted directly into the stomach), neurology, ophthalmology and epilepsy.
Despite the many challenges Ella faces, Samantha says she is a happy girl. She said: “She is quite a bubbly little thing, a happy girl, always ‘chattering’ away and smiling.
“But the seizures mean she is stuck in regression and the developmental milestones she achieved have disappeared. We thought we might be able to reduce equipment as Ella started to do things by herself but now we find ourselves needing more and more.”
Samantha says funding will help big sister Mia, who is Ella’s “biggest fan” but has had to miss out on trips and treats, as well as family time.
She said: “Mia is such a good girl but she has gone through a lot. Ella has had 10 admissions for pneumonia and we spent four months in hospital. Mia has been from pillar to post and we did see a lot of anxiety. When we have to go to hospital Mia gets very worried.
“We have had a few rough years although Ella is getting stronger now. Mia’s school is really supportive and we are so lucky as we have the best neighbours next door, Laura and Paul, who are so supportive and always there to help out with Mia in an emergency.
“But Mia has missed out and you can’t get those years back.”
To help with the fundraising effort a special Legends vs Ramsgate Select XI event will be held at Rams FC’s WW Martin stadium on Sunday 2nd July from 2pm. The event will include special guest appearances. Admission is free but donations to Ella’s fundraiser are requested.
A fundraising page has also been created by family members.
