1st June 2025 Jamey-Lee's story: "They know her, they love her and my family are so grateful"
Toni explains: “My Jamey-Lee, or Jay, is the happiest kid. She doesn’t need words to show her joy—she giggles. Loud sounds make her light up, and the louder I am, the more she laughs. Since she’s visually impaired, sound is her world.
But as Jay grows—she’s 16 now—her medical needs were becoming more complex. She had spinal surgery which improved her scoliosis, but her seizures are worsening due to hormonal changes. She still needs 24 hour care. She wakes at night and loves to party at 3am! It can be exhausting.
But the staff at Rose Road understand. They listen, they care, and they ask how I am—something so simple, but it makes a huge difference. You’re approachable, you listen, you take everything on board.
And now, after a year of fighting to get a higher level of support for Jay, we recently got confirmation that we’ve been given funding for one night a week at Rose Road, a big increase on the 3 or 4 nights a month that we had before.
It's been a struggle, sometimes it feels like I’ve spent 16 years fighting for something that is Jay’s right, but Rose Road were with me the whole way.
From attending meetings with me and working with social workers, to gathering all the evidence of her complex needs, I couldn’t have done it without them. They kept me sane and Jay’s carers are absolutely spot on always making sure she is happy.
I now get a restful night’s sleep every week, I have an evening where I can spend quality time with her younger sister Maggie, I can breathe and even take time for myself when I’ve always put myself last.
Rose Road are saving me every week.
Because of Rose Road, I’ve had breaks that I wouldn’t have otherwise. They made it possible for me to go on holiday, to attend my cousin’s wedding after Covid, which I would have been really sad to miss, and even to grieve when I lost a close friend, by offering us emergency respite nights for Jay that weren’t part of our package.
They know her, they love her and my family are so grateful. But Rose Road isn’t just support for Jay—they support our whole family and help me keep going.
I call you all my heroes. We wouldn’t be the same without Rose Road in our lives.
Now, I can just focus on spending special time with my girls and appreciating them, instead of spending all my time with professionals. I recently took Maggie shopping and she made a Build-a-Bear for Jay’s birthday. It was all her idea and she loved giving it to her sister.
I love watching our relationships with each other get stronger every day."
This June, Toni is taking on the Double Whammy Skydive and Abseil for Rose Road!
Making a 15,000ft leap out a plane and stepping out 100m above ground from Portsmouth's Spinnaker Tower, Toni is hoping to rasie £750, which could pay for two nights of emergency respite for a family.
