A teenager who was initially thought to have growing pains by her GP was later found to have a progressive illness which stops her walking, talking and even breathing properly. Abria Lewis, 15, was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), a rare degenerative auto-immune disorder, at the age of 10.
It meant the talented school athlete and swimmer had to give up most of her passions almost overnight and is now dependent on her heartbroken family. After living with the condition for five years, and finding a monthly routine of plasma exchange and medication which kept her "borderline stable", she relapsed. Her CIDP has now progressed from stage two to stage three which means chemotherapy is the only treatment option left.
Her mother Esther Lewis said: "Abria is an amazing human. She is more than resilient - she has picked herself up over and over again. Her brightness and love shines through that beautiful smile. She maintains her politeness through the pain. She cries quietly and behind closed doors. She never demands, makes a fuss. She never asks 'why me?' She is kind and will always go out of her way to help others."
Esther, from Pontprennau, Cardiff, said Abria started complaining of pain in her right upper arm and shoulder in April 2018 which went on for a week or two. "I took her to the GP they said it was probably growing pains and to give her Calpol. We did this and there was no change," Esther recalled. "I used to rub her arm with essential oils and do mobilisations to try and ease the discomfort, but within a week this pain started in the other arm. She was now complaining of heavy and weak arms.
"By May she was finding it difficult to things like clean her teeth, brush her hair, and do up zips and buttons. Again I took her to GP who referred her to a paediatric consultant. We were put on a waiting list. By the middle of May Abria was finding if difficult to walk, had heavy legs and was extremely tired."
Ester said she remembered one trip to the park which hit home the true extent of her daughter's illness. "I asked her to try and run, and she literally fell like Bambi to the floor. Abria now had a shuffling gait and was unable to shuffle more than a few steps without support.
"Her arms had deteriorated and I was having to feed her. She was finding it difficult to swallow, her voice had changed, her energy levels were ridiculously low and she had lost an extreme amount of body mass. I made an appointment to see the GP and an osteopath, but again we were told it was growing pains and nothing to worry about."
Abria then deteriorated further in the following few weeks and became so weak that she couldn't get out of bed. "One morning I was getting ready to go to work and Abria still hadn't got up" Esther added. "I was shouting for her to hurry up and she didn't answer. I went up the stairs and she was lying in bed, very still but crying. I asked her what was wrong, and she told me she couldn’t move. Her legs, arms and body wouldn't lift her up.
"She was frightened. I called for my husband and he carried her out of bed and downstairs. We sat her on the sofa, helped her to stand, and supported her to walk. I immediately took her to A&E. We were told it was a spasm and she would be okay. But that evening she could not hold her knife and fork, chew or hardly swallow her food. Her breathing was different and she had to be carried from A to B."
Rather than waiting for the referral to the paediatric team, the family decided to travel to London to see a paediatric neurologist privately. "By this time Abria was literally on the floor. Her whole body had given up and she was unable to walk, talk, breathe or function in any way," Esther added. "It was the most horrendous thing I have ever seen.
"As soon as the consultant saw her, they admitted her as a medical emergency. She had all the neurological tests at Great Ormond Street Hospital and was diagnosed with Gillian Bare Syndrome (GBS). She was in intensive care for five days and remained in hospital for three to four weeks. She was given a concoction of drugs and then had to under go intensive rehabilitation and physio for the duration. We were told that this would be the end and she would eventually make a full recovery."
But that was far from the end of Abria's problems. After two weeks at home in Cardiff she relapsed and was taken by ambulance to the University Hospital of Wales where extensive tests were carried out. It transpired that Abria did not have GBS but chronic inflammatory demyelinating polyneuropathy (CIDP), a rare, progressive autoimmune disease that affects the nervous system.
"It is considered a disease that children either grow out of or make a full recovery. This is utter rubbish," Esther added. "I was told initially there were three people in the country with this type of disease and the other two were adults. We have looked at trying to get genetic testing, however the private insurance that Abria initially had was pulled away from her, so we could not afford the thousands of pounds it costs to get these tests done.
"To put it simply the disease is winning. The damage it causes is not reversible and this will continue to degenerate rather than regenerate. She suffers with severe tremors that affect her daily life and living, fatigue that leaves her in bed for 18-20 hours each day, weakness in legs and arms, muscle wasting, memory loss, reduced development and growth.
"And that goes without mentioning the mental health impact, losing all that she has known and what she should be doing as a teenager; watching on as all the other kids do what she cant. Yet because it is so poorly understood and it is not cancer, she is often branded a drama queen or the on/off wheelchair girl. The treatment by others that she has had to endure, as well as this disease, has been horrific."
Esther said the current drugs Abria is on do not stop the disease, but trick it. "However, over the last few months it has not worked, so symptoms are creeping back in after treatment, which means less than a two-week window [of her being well]. They are unable to control the disease and put her into any sort of remission.
"We have been going around in circles for over five years now. The longer the disease goes uncontrolled the less likely it will ever be controlled, hence we are now in the last stage (3) where more damage will be done and the long-term effects are irreversible."
When the family were told that chemotherapy was the only treatment option left, Esther added: "It's like having the bottom of your world drop out. You feel nauseous and numb. It's like a surreal bad dream that you want to wake up from.
"This disease has taken so much away from her at such a young age, and she has had to deal with so much loss, so much change, pain and fear. There's also a lack of understanding from her peers. It would be difficult for an adult to have to come to terms with this illness, let alone a kid."
Her auntie, Esme Addams, has now set up a GoFundMe page in the hope of raising enough money to give Abria some "precious memories" before she becomes too unwell to enjoy them. "I want to reignite the power of hope in her and give her something to keep fighting for," she said. To donate please go here.
"When we look back memories are all we have. I want her to be able to make plans. I want her to smile and have joy. I want her to feel supported and to know that she does matter and people do care."
READ NEXT
Wales now has more Covid cases per head than England as infection rates rise
'I watched my mum die in front of me after we waited seven hours for an ambulance'
