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Climb For Renae

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Our Renae my great niece was born on October 4th, 2012, as a healthy and joyous baby. Her parents, Becky and Danny, were overjoyed with their firstborn baby girl. Renae became the big sister to Bradley, aged 5, Denver, aged 3, and her newborn sister, Hallie, who arrived just last week.

However, when Renae was only 5 months old, both she and her mum, Becky, contracted measles simultaneously, requiring a visit to A&E as Renae became quite ill. Thankfully, she recovered and thrived as a child, receiving all the standard vaccinations, including the MMR vaccine. Becky noticed that Renae's handwriting became untidy and she displayed a bit of what she jokingly called 'Little Miss Attitude.' Initially, they thought nothing of it, but then a bombshell hit them: Renae started having seizures.

This was in mid July 2023 when she had her first seizure while at school. Renae continued to have a seizure a week for 3 consecutive weeks. In the 4th week Renaes seizures started to get more frequent and Renae had a seizure every other day. After a while and with medication, they managed to get the seizures under control. Things took a severe turn two weeks ago when Renae was admitted to the hospital.

Her condition rapidly deteriorated, and she lost her motor functions and it became worse. Renae started struggling to do almost all everyday things which she was very independent with before. Renae then started to lose the ability to speak and then struggled to stay awake. After numerous brain scans and lumbar punctures, they received the devastating diagnosis: Renae had contracted Subacute Sclerosing Panencephalitis (SSPE).

This rare virus is caused by diagnosed measles, usually contracted within the first 12 months of life, before the MMR vaccination is administered. It remains dormant in the brain for 7 to 10 years. SSPE is incredibly rare, with only 4 in 10,000 children affected. In the last 25 years, there have been only 6 reported cases. There is no cure, and the progression can be swift, with death occurring in as little as 12 weeks. Remarkably, one case in the UK, a boy younger than Renae, is still alive after being diagnosed with SSPE in 2018, although in a vegetative state. Renae's prognosis is exceedingly grim as she currently relies on life support in Manchester Children's Hospital.

As parents of a 10-year-old, they face the agonizing decision to discontinue the life-sustaining interventions. The entire family is devastated. Renae had eagerly anticipated becoming a big sister and even named her newborn sister, Hallie Renae. Hallie has visited Renae in the ICU, a heartbreaking sight. In response to this tragedy, our family and close friends have decided to raise funds for Renae and the Ronald McDonald House where Becky and Hallie are staying to be close to Renae. This facility is entirely self-funded and provides accommodations for parents of critically ill children.

On October 21st, 20 of us (probably more)will attempt to climb Snowden to lend our support (all 1085 metres of it). Yes, even I, an old, out-of-shape great uncle, will give it a shot (please, no laughter).

We want to extend a special mention to Ian Jones, head of workplace services at ITV, Lee Rayner, the Production Manager whose name you might see at the end of Coronation Street credits and Angela Linksky. They have generously funded a coach with a driver to take a team of us to Snowden on a cold, dark October morning and, hopefully, bring us all back safely.

If you can, please consider donating to our GoFundMe page. By raising awareness of this devastating virus, which can result from diagnosed measles and can affect any of our families, we hope to prevent other young children from enduring what Renae and our family are currently facing. Thank you, Ian

Donations 

  • Anonymous
    • £10 
    • 9 mos
  • Terence Donovan
    • £50 
    • 9 mos
  • Anonymous
    • £20 
    • 9 mos
  • Nurun Cunningham
    • £10 
    • 9 mos
  • Gill Price
    • £15 
    • 9 mos

Fundraising team: Ian Archer (5)

Reece Archer
Organizer
Ian Archer
Team member
Katie Archer
Team member
katie Davies
Team member
Nathan Archer
Team member

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