'Our children don't get invited to parties': UAE mothers call for compassion on world Rare Disease Day

The mothers of children with diseases so rare they haven't been named have organised walk in Dubai to raise awareness and encourage research funding

26.02.19_ A group of mothers who all have children with rare diseases meet up at a coffeeshop in Dubai, Arabian ranches. From Left: Cathy Paul- Fijten, Jamie Hutson with her 5 month old daughter ( who is healthy and without any illness) and Hind Altayeb. Anna Nielsen for the National
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What is a rare disease?

A rare disease is classified as one that affects a small percentage of the population. More than 7,000 diseases are identified as rare and most are genetic in origin. More than 75 per cent of rare genetic diseases affect children. 

Collectively rare diseases affect 1 in 17 people, or more than 400 million people worldwide. Very few have any available treatment and most patients  struggle with numerous health challenges and life-long ailments that can go undiagnosed for years due to lack of awareness or testing.

Two years ago, Cathy Paul-Fijten's daughter could barely swallow, let alone speak. She needed help to sit up and there is still no cure for her condition, which is so rare it does not even have a name – only a configuration of numbers and letters representing a gene.

Milou, 3, had ZC4H2 deficiency diagnosed a few weeks after her birth. Therapy helped improve her mobility and she is about to begin attending school, where special modifications are being made to accommodate her, her mother says. 

But the biggest issue for children with rare diseases is the potential for isolation.

"Our children didn't get invited to birthdays," Ms Paul-Fijten, from the Netherlands, says. "They are not invited to play and many of our old friends have stopped speaking to us. No one visits us. They are scared of our children." 

She and four other mothers of children with rare conditions have organised a walk on Kite Beach in Dubai on Thursday – which is world Rare Disease Day – to raise awareness about their children's ailments and the challenges they face.

The rare nature of their children's diseases means very little research is done on them, impeding the search for a cure.

“We hope to create awareness that rare diseases are real and a huge problem. The world doesn’t know enough about it,” Ms Paul-Fijten said.

With most funding going towards research into diseases such as HIV and certain types of cancer, she said very little is allocated to rare diseases.

Ms Paul-Fijten says she and the other mothers are often asked what can be done to help children like hers and her answer is always "acceptance".

"Our children are regular children, they have the same emotions other children have and all they want is love. Why do they have to be segregated and feared?" she says.

Each year, Rare Disease Day events are organised in more than 100 countries worldwide to raise awareness about the effect these diseases have on patients and their carers. This will be the second year the UAE marks the event.

Ms Paul-Fijten met the other mothers at one of the weekly therapy sessions they attend.

"Therapy means the difference between life and death for our children," Hind Al Tayeb, 29, says.

Her son Abdulkarim Saleh, 3, suffers from COL4A1. His symptoms vary but include developmental delay and haemorrhaging. Though treatment, his condition has improved but he also recently lost sight in his right eye.

"Our days are spent in doctors' appointments – going from one appointment to the other," she says.

"That first year in Dubai when you are on your own and your family is away and you have a child who is very sick, you feel so isolated," Ms Al Tayeb says. "But when you meet another family who can relate to what you are going through that makes a huge difference."

The children of Ms Paul-Fijten and Ms Al Tayeb are the only people with their conditions in the UAE. The mothers met at High Hopes Therapy Centre, a non-profit organisation in Dubai, where their children receive care.

"Things do get easier," Ms Al Tayeb says. "And my biggest blessing is meeting these other women, being able to laugh again. If I can give that to one other family then I'll be very happy." 

The mothers said that though they appreciate the steps being taken in the UAE to promote inclusion in schools,

The walk on Thursday taking place with the support of Sheikh Nahyan bin Mubarak, Minister of Tolerance and President of UAE Genetic Diseases Association – which is also backing the event – plus the High Hopes Paediatric Therapy Centre in Dubai, in partnership with Al Jalilah Children's Specialty Hospital.

The theme for Rare Disease Day this year focuses on bridging the gaps in co-ordination between medical, social and support services to tackle the challenges that people living with a rare disease and their families face every day.

Rare Disease Day will include a walk along the promenade at Kite Beach in Jumeirah followed by kite flying, speeches, and activities for the whole family.

The event is open to all. "The more the merrier," says Ms Paul-Fijten, who founded the ZC4H2 Research Foundation. "Last year 500 people showed up and this year we hope at least a thousand turn up."  

What is a rare disease?

A rare disease is classified as one that affects a small percentage of the population. More than 7,000 diseases are identified as rare and most are genetic in origin. More than 75 per cent of rare genetic diseases affect children. 

Collectively rare diseases affect 1 in 17 people, or more than 400 million people worldwide. Very few have any available treatment and most patients  struggle with numerous health challenges and life-long ailments that can go undiagnosed for years due to lack of awareness or testing.