Enola Halleron still fits into the clothes she wore as a three-year-old, and some days gets so tired she has to crawl instead of walking. The 10-year-old, who measures just 97 centimetres, has a extremely rare disease which means she will never grow more than one metre tall. Morquio (MPS), an incurable growth stunting disease, affects just 105 children and adults in the UK. Enola, from Blackburn, was diagnosed when she was two-years-old after doctors noticed an abnormality with her hips. She has grown just 5cm since she was five, which makes her almost 2ft smaller than the average ten-year-old girl. She also only weighs around two stone more than when she was born.
Al-Imdaad Foundation are appealing for a wheelchair adapted vehicle. Ideally, Volkswagen Caravelle. In thinking ahead and including Enola’s future needs as well as now. This vehicle would include an underfloor side chair lift to allow her to sit with other passengers and would allow for future adaptation when they are needed. This vehicle would make journeys comfortable in her wheelchair and seating and parking arrangements as normal as we can make it. We would like her to sit with others in the vehicle and be able to open doors. With her condition being progressive and we have to factor in even less mobility and other difficulties we have seen in older sufferers.
Enola’s mother Donna Halleron, 40, said: 'She wasn’t a normal baby as she did weigh 11lb 1oz, which obviously is very big. 'The only thing that doctors did pick up on was that she had positinal talipes which made her foot deformed. 'It had been stuck in my rib cage when she was in the womb.
'We were told it would correct itself with physio but, that it may have a knock on effect on her hips, so she was monitored for that.
'It was only after x-rays and check-up appointments that a doctor actually said to me, "There is only one way to describe Enola’s hips and that is weird".'
Morquio is a lifelong condition with no cure. A few adults can live until their 50s or 60s but the majority rarely live beyond their 20s or 30s - which is Donna’s biggest fear for her daughter.
The part time teacher said: 'After her diagnosis I remember looking it up on the internet and just sobbing for two hours. 'It is devastating to think that she may not live a long life because looking at her beforehand she was just a normal child running around. 'It is getting harder for her now though as when she was younger there wasn’t much difference between her and other children.
'But now her classmates are almost double her size and she does obviously stand out.
'People treat her like a baby and stare at her in the street but I just have to try and explain to her that they don’t understand.'
Most children diagnosed with Morquio disease will not grow taller than one metre and suffer changes to their skeleton leaving them unable to walk by their teens. Enola is missing the enzyme which breaks down cell waste which results in her body retaining materials that could damage her organs, bones and joints. Despite Enola not growing in stature her internal organs will continue to grow causing life threatening complications. Her mother said: 'She has been on the replacement therapy trial since 2009 were she is given the enzyme Vimizim once a week for four hours.
'We know that it isn’t going to reverse what she has but it will reduce some of the symptoms that morquio can cause and make her more comfortable.'
Enola now depends on a walking frame but Donna is hoping to raise money with the help of local charity Al-Imdaad Foundation to be able to buy a mobility car. She added: 'I don’t want every day to be a battle for her. 'There will come a time when she won’t be able to get out of her wheelchair and I want to give her the most normality possible.'
"I have got to think ahead and include Enola’s future needs as well as now. Her condition is progressive and I have to factor in even less mobility and other difficulties I have seen in older sufferers. I would like her to sit with others in the vehicle and be able to open doors. This would need powered doors at £540 and an underfloor side chair lift at an extra £6,000 which will enable future adaptations as needed, and better access with parking etc. I have also attached the price list for the vehicle without the mobility option. £34’995 + £540.
I have done a screen shot of a dream vehicle at the bottom. At present I am able to carry and assist transfers etc, but this will become more and more difficult as Enola gets older and the condition progresses. I have thought long and hard and would envisage this vehicle lasting 10 to 15 years or beyond as I am not in a position to replace.