Rare disease creates bond between Israeli and Palestinian patients

by

They met in the Paediatrics Department at Hadassah Hospital Mount Scopus, two couples whose children suffer from a rare disease. One couple from an ultra-Orthodox neighborhood in Jerusalem, and one couple from Gaza, both sharing the same concern for their tiny loved ones who are hospitalised for treatment and follow-up at a Hadassah Paediatric gastroenterology clinic. 

Prof. Michael Wilschanski, director of the Paediatric Gastroenterology Unit at Hadassah, relates that the syndrome the two babies suffer from is very rare; there are only 30 children worldwide with this condition, where there is a deficiency in one of the enzymes that aids in the digestion of fat. The two babies, he says, depend on a special food medicine, called Tolerex, to live. “The syndrome does not allow the intestine to function properly in digesting any other type of food,” Prof. Wilschanski explains. “This is the only food that exists for them. It is very expensive and very complicated to purchase for those who do not have medical insurance.”

D, the mother who speaks Hebrew, relates, “When we heard that the parents from Gaza had trouble getting the medicine and paying for it, we decided to perform an act of kindness and help them get it. We enlisted everyone we know, both friends and acquaintances, for this effort. Soon the medicine arrived and they were very excited and happy. It’s the only thing their daughter can eat.”

D. adds, “As far as we’re concerned, a sick baby is like any other baby, no matter what its nationality. We helped with all our heart. When we needed this special remedy, there were those who got it for us, and now we have passed the mitzvah on.”

The parents from Gaza do not conceal their excitement. “Thanks to these generous people, our daughter was given life-saving medication. She is now improving and eating these food capsules. We do not take it for granted. We thank them every day and every minute. It is an act of kindness that we will never forget.”

The babies are being taken care of by Prof. Wilschanski, together with Dr. Peri Milman, an expert in Paediatric gastroenterology. “We are in the best of hands,” says D. “Prof. Wilschanski diagnosed the rare disease my daughter suffers from by her symptoms alone, even before the test results arrived. His knowledge and understanding are astonishing, as are his compassion and his ability to accompany families through the long process.”

D explains how Prof. Wilschanski has been there for her family for many months, day and night. “Even when he travelled abroad,” she says, “he asked us to be in touch by phone for every need, caring for our daughter 24 hours a day. And Dr. Milman is so cordial and has a heart of gold. Unassumingly, she performs the most complex tests with such professionalism and gentleness. There is no doubt that we owe this team so much.”

Prof. Wilschanski with the babies

 


About the Author



DONATE NOW

Donate

£

Please enter above the amount you would like to donate

Personal Info

25% more with Gift Aid
Billing Details

Donation Total: £25.00

Contact Us

Hadassah UK
25 The Burroughs
Hendon, London
NW4 4AR
Tel: 0208 202 2860
Email: uk.office(at)hadassah.org.uk
Registered Charity No. 1040848
Terms, Conditions and Policies

Check us out on Facebook