Santyna Marchesi meets Seren-Rose, a two-year-old from Waltham Abbey with Menke-Hennekam syndrome and talks to her family about her unique life.
SEREN-ROSE TIPPETT is a two-year-old girl from Waltham Abbey Essex, Seren-Rose was born on July 7 2018. Throughout the whole of Jodie Kenny’s pregnancy there was not a worry in her or her fiancee Dean Tippetts, heads that there would be any complications, the doctor’s had told them everything was normal. On July 7 Jodie went into labour, she had a cesarean. As soon as Seren-Rose was born Jodie recalls hearing the doctors say: “She’s tiny. She shouldn’t be as tiny as she is.”
Instantly the paediatricians came to Jodie’s room as they had noticed a hole in Seren-Roses gum, they assumed this was a cleft palate. The paediatricians asked Jodie a lot of questions, she said: “ The paediatricians came round straight away and started asking questions like does she look like your other children, We think that she’s got abnormal features she’s got abnormal eyes, mouth and chin nothing looks like it should.”
The following day Seren-Rose had an MRI done on her brain and that’s when they discovered that part of her brain was missing.
Seren-Roses condition was confusing to the doctors, Jodie said the doctors told her:
“We can’t tell you whether she will be at the severe end and if she’s at the severe end she’s literally going to be, I can’t remember how they described it but it was a bit like she literally will be sitting in the corner rocking and she’ll have no quality of life, through to she could lead a completely normal life and they just couldn’t tell us and still can’t tell us now.”
It wasn’t until October last year that Seren-Rose was diagnosed with Menke-Hennekam syndrome. Menke-Hennekam syndrome is extremely rare. Only 30 people in the world have ever been diagnosed with it. This is why doctors do not know a lot about this condition. The main complication that comes with this syndrome is that most children are born without a corpus callosum. This is part of the brain which controls alot.
For Seren-Rose Menke Hennekam has mainly affected her vision, hearing and eating. Another complication that comes with Menke Hennekam is intellectual disabilities. For example learning disabilities and global developmental delays.
Jodie said the worst part was not knowing, she said: “That was hard because we never knew what was going to happen in the future and all the care she’s going to have, so it’s all been a bit of a learning curve every day really and that was that was probably one of the hardest things is just not knowing.”
“It is very unlikely that she will be able to do the things that a ‘normal’ child or adult will do like leaving home, getting a job, driving just the sort of things that are pretty standard, we kind of know that it’s highly unlikely now like other things, she’s not developed speech and shes unlikely to speak as well so her not being able to communicate with us is hard.”
Karen Kenny Seren-Roses grandmother said, “When Seren-Rose was born I was worried for her brother and sister as their life would never be the same and there would be a lot of hospital appointments, I knew it was going to be hard especially because no one knew there was going to be a problem during the pregnancy so they didn’t have time to prepare.”
However Seren-Rose has made her family proud and continues to do so every day, Seren-Rose recently took her first steps despite the doctors saying she may never be able to walk. Seren-Rose is also now giggling, laughing and recognising people. These are all things Seren-Rose never used to be able to do.
Jodie explained how Seren-Rose has met many milestones that didn’t seem possible before, she said: “Before if you walked into a room she would just ignore you and just carry on playing with her toys whereas now she wants attention, she wants you to cuddle her. she’ll come up to cuddle you and things like that so I think it’s just the really small things every day that she does that make you think what a clever little girl.”
Karen Kenny explained how she doesn’t see Seren-Rose as any different to her other grandchildren, she said: “Of course she may have different needs that my other grandchildren do not have but that does not matter, all my grandchildren are the same to me. However, when Seren-Rose meets a milestone that moment is a lot more special because of the chance she could’ve never reached them.”
Abbie Kenny is so proud of how far her niece has come already. She said: “It feels my heart with joy as her auntie, I’m just so proud of her and excited for what lies ahead and all the milestones that we’re hoping she’s going to hit.”
Due to the lack of cases of Menke-Hennekam, Seren-Rose has a GoFundMe page to help with the high expense of therapy, the expenses will go to a specialist physio, occupational therapy and auditory therapy program (to aid communication).
So far the page has raised a whopping £17,376 of the £25,000 goal.
Seren-Rose has had a huge amount of support from people who have been: attending quiz nights, attending Christmas fundraisers, donating money and even competing in charity challenges.
Jodie explained how people are being so generous, she said: “Dean and a few of his cabby mates put up the page in their cabs and people who got in gave a lot of donations. People started asking who’s this little girl? and then Dean would explain our situation and we got a lot of donations that way which is so amazing.”
You can donate to Seren-Roses GoFundMe below: