Resilient Surrey teen triumphs despite being 'picked up like a doll' due to short stature from rare condition

A teenager who is missing part of her left arm, hand and oesophagus, and vomited "violently" for at least seven days every month until the age of 12, is studying to pursue a career working with animals after winning a prestigious national education award.

Louise Fox, 49, a speech and language therapist who lives in Addlestone, Surrey, said her daughter Gabriella Fox was diagnosed with a rare condition called VACTERL after she was born, and had her first surgery at just 36 hours old.

The condition resulted in Gabriella, now 17, being born with "gaps all the way through her digestive system" and having "a shortened left arm with an absent radius (bone) and thumb".

Gabriella has always been much smaller than her peers, now measuring 4ft 6in, and due to her limb difference and missing left thumb, doing up buttons on shirts, tying her hair and getting changed can be "tricky".

Louise said the main challenge is "knowing how to deal with other people" as Gabriella has never let her condition hold her back. "When she first started nursery school, she wasn't really walking, she had a walking frame," Louise said.

"Because she was so much smaller, the other children we're talking two-year-olds and three-year-olds were picking her up and carrying her around like she was a doll and playing babies with her."

"I even had one adult come up to her and grab her arm she didn't speak much English and she was waving her arm at me, going 'Broken, broken'."

In the first few years of her life, Gabriella had more than 30 operations, and at a year old, she started showing symptoms of cyclic vomiting syndrome (CVS) a rare disorder that causes repeated episodes of being and feeling sick.

Gabriella was not officially diagnosed with CVS until she was six, but the "debilitating" illness led to her being home-educated at the age of 10, as she would be "violently sick" for at least seven days every month until the age of 12.

Gabriella has since completed several GCSEs and qualifications, including in cookery, and was named an Against All Odds winner at the NCFE Aspiration Awards 2023, which recognises learners who have overcome difficult personal circumstances to succeed in their studies.

She is now studying for her Level 2 Extended Certificate in animal care at Nescot College in Epsom as she loves working with animals, and in her spare time, she enjoys rock climbing and going out on operations as a police cadet.

She is also learning to drive a manual car with adapted functions for the handbrake, as she knows she would need a licence to drive vehicles on a farm.

Louise said: "I think we started to learn very early on that, actually, not one size does fit all and, actually, it's OK to say is there a different way that's going to work for us."

Gabriella was not diagnosed with VACTERL an acronym for the main symptoms: vertebral defects, anorectal anomalies, cardiac defects, tracheo-oesphageal fistula/oesophageal atresia, renal abnormalities, and limb abnormalities until after she was born, but Louise found out that her baby was "different" during her 20-week pregnancy scan.

She said the sonographer "couldn't find a stomach" and noticed Gabriella had a limb difference a shortened left arm with an absent radius bone and thumb and she and her husband Richard, now 50, were referred to specialists at St George's.

After Gabriella was born in April 2006, she was taken into the neonatal intensive care unit and had her first seven-hour operation at just 36 hours old, as her oesophagus was not connected to her stomach.

"Basically, there were gaps all the way through her digestive system, so the first thing they had to do was try and connect her mouth to her anus because it wasn't a continuous line," Louise said.

During the surgery, known as a tracheoesophageal repair, Louise said Gabriella experienced complications, and she spent the next four and a half months at St George's recovering.

She required several smaller surgical interventions in between, but was discharged with a nasal gastric tube for feeding which she pulled out within an hour of coming home from hospital.

Louise tried breastfeeding instead, and Gabriella's severe reflux meant she ended up doing this every hour and a half, day and night, for the first year of her life and for six months she had operations every two weeks.

"Because the reflux was so bad and because they had to really stretch the oesophagus, it was really narrow, and there was so much scarring it kept closing up," Louise said.

"So every two weeks, she was back into St George's for an operation to try and open her oesophagus."

At a year old, Gabriella was still the size of a "newborn baby", leading doctors to put a permanent gastrostomy device a feeding tube directly into her stomach, which she still has today.

Gabriella said her schools were very accommodating, making adaptations to help her where needed but it was decided that she would be home-educated aged 10 after she was diagnosed with CVS.

"It basically meant that, every single month, a week to 10 days out of every month, she would be violently sick to the point where she couldn't eat or drink for seven to 10 days," Louise said.

"She would be in bed, need a nappy, need fluids through her tube... she wouldn't be able to eat she couldn't even swallow her saliva because she was so nauseous and that happened every month for the first 12 years of her life."

Louise said educating Gabriella at home has "suited (her) really well" and she now only gets "occasional attacks where she's nauseous" as she has found medication to control her CVS symptoms.

While Gabriella has experienced "trauma" from all the hospital treatment over the years and used to have panic attacks, this has not stopped her from achieving her goals particularly with her education and hobbies.

She attained English language, history, biology and maths GCSEs, and in January 2022, she began her NCFE Level 2 Certificate in creative craft (cookery) and completed it in June 2023.

Gabriella's commitment to learning saw her named an Against All Odds winner at the NCFE Aspiration Awards 2023, and she also enjoys hobbies including horse riding, dog walking and rock climbing.

Gabriella said she does not consider herself as brave, as she did not "choose" her conditions and has lived with them all her life, but she wants to encourage people to pursue their dreams and hopes her story will inspire others.

Speaking about Gabriella's achievements, Louise said: "I feel incredibly proud... life is so different now and we could never have seen getting to this point."

"Even three or four years ago, when the cyclic vomiting was not under control, that was so debilitating for us as a whole family we couldn't plan to go on holiday, we couldn't do anything in case she got sick."

"Envisioning her being able to go to college, all of that, we just didn't ever think that potentially would ever be possible. We just can't quite believe where we are now, and I'm just, more than anything, really thankful that she's able to have a really good quality of life."

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