Spreading the word about genetic conditions
TO LOOK at Jess Cohen, you would not think anything was amiss with the 15-year-old North Londoner. But when she was 11, Jess was diagnosed with NF2, a rare genetic condition which causes tumours to grow along nerves.
A previously happy go lucky child, Jess began suffering excruciating pain from the tumours on her spine.
At first she thought she had pulled a muscle, but the pain became so bad that no amount of painkillers worked. Frightened and unable to work out what was wrong, her parents took her to hospital.
“I was in agony all the time,” Jess recalls, talking to the JC at the family home.
Taking up the story, her mother Mel adds: “She would go to bed and couldn’t sleep because of the pain. I’d hear her pacing the hallway.”
Jess underwent a major operation to remove the tumour. “It was a terrible time for her,” Mrs Cohen says. “No parent likes to see their child in pain. It is even more worrying when you are desperately waiting for the answers.”
Today, Jess’s condition is managed on a “watch and wait” basis, meaning she receives regular check ups. If tumours, which are normally benign, become a problem, they are operated on.
Now the shy and courageous teenager has contributed to a series of books about a family and their friends, “the Genies”, who have disabilities and genetic conditions.
The Treehouse at Number 9 books were the idea of Mrs Cohen’s friends, Sara Jackson and Karen Shooter, who wanted to create a tool to break down barriers and stigmas around young people with such conditions.
“I really struggled to talk about having NF2 when I was first diagnosed,” Jess explains. “It was hard to talk to my brother about what I was going through. When he would ask me about my condition I didn’t know what to say.”
To help her talk about her condition, Jess came up the characters Pip, who like her has NF2, and Freddie, who has Down’s syndrome.
“We talked about what Pip would look like and Jess drew pictures of her and I helped to work it up into a character,” Mrs Shooter says.
Jess adds: “I wanted Pip to have NF2 but I didn’t want that to define her. It is just a thing she has. She has a lot of fun in the books.
“That is how I feel about my condition — it is not the most
The Treehouse at Number 9 books feature Pip, a character devised by Jess Cohen
I don’t think Jess realises how far she has come’
important thing about me. It doesn’t mean I can’t do things.”
Mrs Jackson’s son Louis is one of the few children to have been diagnosed with two chromosomal disorders, 18p and 22q.
“These books are for the families as much as they are the children with a genetic condition,” she says. “It is a great tool for siblings or classmates in educating them to accept difference.” Mrs Cohen says the books would have helped her son Seth to better understand what Jess was going through. “I remember Seth saying that he wanted to be included — he didn’t want to be taken off for a hot chocolate when Jess went to hospital.
“We asked him what would help and he said if hospitals had books that siblings could read that would make it easier.”
Meet the Genies and Heroes Day, the first two books in the series, were published this week and Camp Simcha, which has supported the Cohen family, will be working with the Treehouse team to take the message into Barnet schools. “We have come up with literacy sessions using the Genies characters to educate primary school children about difference,” Mrs Shooter says.
For Jess, the most valuable part of creating her own character has been that it has built up her confidence.
“I’ve given talks in schools about what it is like having a genetic disorder or having a disability,” she says.
“It is scary doing it, but I feel good that I can.” Mrs Cohen is proud of her daughter’s progress. “I don’t think Jess really realises herself how far she has come.
“She went back to her primary school to give a talk and her teachers were in tears by the end of it. The last time they saw her she was in a wheelchair and now she is this grown up girl. She has accomplished so much.”