Parents of baby with Tay-Sachs raise funds for 70 couples to have free genetic testing

A couple, whose son has an incurable genetic disease, have raised enough funds to enable 70 couples in their area to undergo genetic screening for free.

Marley Hakimi, 21 months, was diagnosed with Tay-Sachs when he was just 11 months old.

Tay-Sachs is a neurological disease in which the body does not produce enough of a certain enzyme, leading to the progressive loss of brain function. Tragically, it usually results in early-childhood death, and currently, there isn’t a cure.

The condition, which can be caused when both parents are carriers of the gene mutation, is more prevalent in the Jewish community than in the general population, particularly among Ashkenazim. However, some groups of Sephardim also have a higher than average incidence of the illness or of being carriers.

After their son’s diagnosis, his parents, Chloe and Danny Hakimi, pledged to ensure that other young Jewish adults, especially those thinking about starting or expanding their family, were well informed about the impact of having a child with a severe genetic condition and would have the means to go for genetic screening.

Chloe said: “The diagnosis of Marley was heartbreaking, and we believe that he was brought into this world for a reason, to ensure no other babies will be born into the community with an incurable genetic disease.”

Chloe Hakimi with sons Hudson and Marley[Missing Credit]

The money raised from hundreds of donations made to the Hakimi family’s fundraising page during the recent Jnetics match-funding campaign is going towards an evening in Essex on February 26.

The event, hosted by Jnetics, aims to educate young people about recessive genetic disorders which are more commonly found in the Jewish community. 

It will also give participants the option to sign up beforehand for genetic screening of 47 of these conditions, including Tay-Sachs, using a simple cheek swab.

More than one in three individuals are found to be healthy carriers of one of the 47 disorders. Babies have a 25 per cent risk of being born with one of the conditions if both parents are carrying the same genetic mutation.

Usually, the screening test through Jnetics costs £425 per couple or £315 for an individual, but people who are screened at the Essex event will be tested for free, thanks to the fundraising efforts of the Hakimi family.

Nicole Gordon, CEO of Jnetics , said: “We are hugely grateful to the Hakimi family for their commitment and dedication to our vital work.”

Jnetics runs screening programmes in Jewish schools, universities across the UK and through the Jnetics clinic. Anyone with at least one Jewish grandparent is eligible.

To attend the event in Essex on February 26, you can register here or through the Jnetics website: www.jnetics.org/events/healthier-future/

Upon registering, a link will be sent out to sign up for the free screening. The screening will be allocated on a first come, first served basis, and only a few places remain.

For further information on testing, click here or visit: jnetics.org/screening.

You can also email: screening@jnetics.org