During our Easter Fair we are raising money for the Wiedemann Steiner Foundation, a charity with the mission of providing education about and, most importantly, research into Wiedemann-Steiner syndrome

(Pronounced veeder man).

Most of you will never have heard of this syndrome, and nor had I until my beautiful niece Etta was diagnosed in 2022. Wiedemann-Steiner syndrome (or WSS as it is known) is an extremely rare genetic disorder - one that cannot be tested for in the womb and one that is, at present, incurable.

Children born with WSS are normally the result of a “de novo” mutation, that means that neither parent passed it down, rather it was just a sporadic and incredibly unlucky roll of the dice.

WSS is what’s known as a spectrum syndrome, meaning that affected children can have a fairly wide ranging scope of difficulties, though some are more common than others. These include intellectual disability, global developmental delays, sleeping and digestion issues, problems with their heart and kidneys, low muscle tone, amongst others… you get the idea. What these children go through is intense and given the rarity of the syndrome, it is the parents’ constant mission to educate medical professionals and other therapists about their child’s condition.

My niece Etta has had a rocky start in life, she is far below typical children of her age for weight and height; she has had surgery on her kidneys already with another looming, she has issues with her heart and last year developed pneumonia which was so acute, she was hospitalized for over a month and ended up being placed in a medically induced coma in ICU where she had a cardiac arrest.

I am very pleased to say that Etta is now back home with her family and at the age of 2 and a half years has learned to take steps independently and say a few words (all the key ones like “mummy”, “snack” and “cheers”) with the help of numerous therapists and specialists.

I am asking you today to spare whatever you can to give to the WSS foundation. With their help and aid, incredible medical research is able to happen into the development of WSS in utero and invaluable help and support is offered to those families trying to raise and support their children with WSS.

With your help, we can take away some of the loneliness and confusion that families feel when they get that initial diagnosis, families like mine who battle to live their best lives possible in the face of such a rare genetic syndrome.

Thank you so much,

Sefi, Etta and the St. Andrew's Montessori School Team