It has been a torrid few months for Emirati oil engineer Khalid Ali.
When his daughter, Ghalya, fell seriously ill in February, doctors told him she was in urgent need of a heart transplant.
Since then, the family has moved to Washington where the 14-year-old is recovering from transplant surgery, the latest example of medical collaboration between the UAE and the US.
Mr Ali is now searching for work in the US to support his family.
Despite the challenges, the Emirati continues to smile, especially when he recalls the speech he has prepared for the family of the American who donated the heart that saved Ghalya’s life.
Although donor families rarely meet the recipients of a transplanted organ, Mr Ali hopes he can one day share his joy with them.
“As a parent, a father, I was deeply shocked but we hoped in God and had a strong belief we could find a way to save Ghalya,” said Mr Ali, who left his job with Adnoc to be with his daughter and her mother, Anas, in Washington.
“Doctors told us the big challenge was to find a donor. It could take weeks, month or even years.
"This was time we did not have.”
Ghalya lived with a defective heart since birth, and had already endured two bouts of surgery, at seven months old and again a few years later.
In February, when she began vomiting and had intense stomach pain, she was taken to Sheikh Khalifa Hospital where doctors diagnosed progressive heart failure.
Ghalya was admitted to hospital for a month of evaluation on her suitability for a transplant. Doctors had to assess the size of heart required and carry out other health checks before a major operation.
As her health deteriorated further, she was placed on a ventilator and given medicine to keep her failing heart alive. Doctors hoped to buy her time to find a suitable donor.
“I and the Department of Health contacted many hospitals in Europe and elsewhere to ask them to take Ghalya for a transplant, but none would do it,” Mr Ali said.
“They said it was too risky, so it was a very dangerous time for her.”
Family relocate to Washington
On April 5, just five days after Ghalya was flown to Washington and admitted to the Children’s National Hospital, a suitable donor was found.
The operation was a success and although she remains confined to her hospital bed, Ghalya is on the road to recovery.
Because she is unable to fly for about three years, her parents have moved to Washington and visit her every day.
Her two sisters, aged 9 and 11, are finishing their school exams in Abu Dhabi before they hope to join the family in the US later this month.
“It is a big challenge for us to live in Washington and the USA in general,” Mr Ali said.
“I have had to give up my career, but I do not care as my daughter is alive. Now I must find a new job, somehow.
“It is hard to live and survive here, but I am trying.”
Medical collaboration has changed paediatric surgery
The collaboration between the Department of Health Abu Dhabi and the Children’s National Hospital in Washington was cemented with a $150 million donation from the UAE in 2009.
It has given hope to hundreds of Emirati families like Mr Ali’s, with young patients sent to the US for specialist paediatric care.
The hospital has also recently developed the Children’s National Research Institute, with funding from Abu Dhabi.
Five unique research centres will focus on transforming treatments in childhood cancer, rare genetic disorders, neuro-developmental disabilities, behavioural disorders and surgical conditions.
It will help many more children like Ghalya receive the life-saving care they need.
Michelle McGuire, executive vice president and chief strategy officer at Children's National Hospital, said the UAE donation in 2009 was the catalyst for change in paediatric care.
“There have many accomplishments since then but it created a platform for our researchers to give life to their ideas,” she said.
“Without that gift, their ideas may have rested on a research study paper and not been actualised, and brought to market.”
About 20 companies have developed treatments thanks to support and research at the hospital’s Sheikh Zayed Institute, established on site after the 2009 donation.
Recent innovations include facial recognition software to recognise genetic abnormalities in babies and a 360-degree camera cradle that maps out deformities in babies. This allows accurate corrections to be made in those born with a talipes equinovarus, or clubfoot.
Researchers have also developed a special dye that can be used during cancer surgeries to allow doctors to pinpoint tumours that cannot be seen with the naked eye.
The hospital’s legacy is its development programme for UAE doctors to train them in paediatrics and other specialist areas.
The first Emirati graduate was Dr Noura Al Dhaheri, who has since become a renowned expert in genetics at UAE University.
Dr Al Dhaheri is one of more than a hundred similar graduates to complete the programme.
“We understand it is not just resources and physical infrastructure, but also talent and developing people,” Ms McGuire said.
“To create this ecosystem, we can bring people together around this discipline and develop a pathway of human talent exchange with the UAE.
“A number of scientists and physicians have come to us from the UAE to study and participate in research here in the US.
“We are committed to helping grow that bench of talent, but it will take time.”
