Talulah prepares for her sixth big haircut to make wigs for kids

At just 13 years old, Talulah Gershon has already donated her hair five times to help children who have lost theirs due to medical treatment. She is now preparing for her sixth – and possibly final – donation

Talulah was diagnosed with Wiedemann-Steiner Syndrome (WSS) when she was around seven years old. The rare genetic condition can affect people in many ways, including with their development, growth and physical health. One of the features of the condition is very thick, fast-growing hair.

Since her diagnosis, Talulah has undergone several operations over the years and is now an outpatient who only needs occasional check-ups. Her mother Rebecca said this was due to the “extraordinary care” at Great Ormond Street Hospital.

But life with WSS has not always been easy. Growing up in Loughton, Essex, Talulah attended mainstream school from reception. As she got older, however, social situations became increasingly difficult.

She now attends a specialist school, which Rebecca says has supported Talulah enormously.

It is there that Talulah has “found her tribe” in her friends and teachers, says Rebecca, adding that it has given her parents peace of mind to know that Talulah is in a school where she feels understood, accepted and can be completely herself.

Talulah is also surrounded by a supportive family, including a younger brother, Jonas, and younger sister, Adelaide, as well as two much-loved dogs. She also loves spending time with her extended family. “We are all a very close, tight family,” says Rebecca.

Despite the challenges she has faced, Talulah has a huge range of interests and a personality that shines through, says her mum.

In November, she celebrated her batmitzvah and loves dancing, listening to Israeli music and getting creative with all forms of arts and crafts. Her favourite pastime is searching for shells on the beach.

Talulah Gershon at her first big hair cut[Missing Credit]

Talulah is preparing for her sixth haircut at the end of November, when she will donate 12 inches of her hair to the Little Princess Trust, which provides free, real-hair wigs to children who have lost their own hair due to chemotherapy or other medical reasons.

Rebecca says: “Over the years, this has become something unexpectedly beautiful. Instead of regular trims, Talulah has one big haircut each year so she can …[give] children who have lost their hair through medical treatment the chance to feel like themselves again.

“She has already donated her hair five times. Five times she has sat in that chair, smiled bravely, and given a part of herself to help another child.”

Talulah Gershon at a previous haircut (Photo: courtesy)[Missing Credit]

It will most likely be the last time as letting Talulah’s hair grow so long means that “hair‑wash night has become a full‑blown adventure”, says Rebecca.

Talulah is also raising money for Spread a Smile, a charity which brings laughter and entertainment to seriously ill children and young people in hospitals and hospices.

During the Covid-19 pandemic, Talulah took part in Zoom calls with the charity. When she was in hospital and the family knew a difficult procedure was coming up, they would arrange a call before or afterwards.

Talulah Gershon having her hair cut for the Little Princess Trust (Photo: courtesy)[Missing Credit]

Rebecca said the charity’s support has been “nothing short of life-changing”.

Spread a Smile does not just support the child who is ill, but also includes siblings and families, something Rebecca particularly values.

On one occasion, the charity made sure gifts were given to all of Rebecca’s children, rather than just Talulah.

The family is hoping to raise as much as possible and shine a positive light on WSS as, says Rebecca, Talulah is living proof that hope can be found in any situation.

She is also emphatic that Talulah “shouldn’t be labelled as her disorder. Rather, I want people to see her for the person she is.

“Through challenges that many adults would struggle to face, she has found a way to turn them into something kind, hopeful and generous.”

To donate to Talulah’s fundraiser, go to: justgiving.com/page/josh-gershon-1 or click here

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Topics:

The Little Princess Trust

Spread a Smile

Talulah prepares for her sixth big haircut to make wigs for kids

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