Josie’s Rehab Journey

Hi everyone,

I am about to take on the challenge of running a half marathon to help raise awareness & resources for our baby girls medical journey.

If you have made it here chances are you have been following our journey with our youngest daughter Josie Rae. Josie was diagnosed with a rare neurological condition called CDKL5 in April this year. After taking her to many different treatments and professionals it took us months to figure out what Josie’s medical needs are, we were given no plan of action by our neurologist so we were forced to looked outside of the limitations of the NHS and even beyond NI to therapies and treatments available in other countries. To say we have felt alone, ignored and discarded by the system here would be an understatement.

Josies condition causes her to have seizures in her sleep and impacts massively her development as a child. Therefore she needs constant input to teach her how to do things that come naturally to other children. She should be seeing a physio, OT & speech & language therapists at least 2- 3 times a week. At the minute she is seeing a physio every 2 months, an OT every 3 months and has had no S&L input since November.

When Josie turned 2 - we said enough is enough. After connecting with mum’s from around the world who have children like Josie, seeing the incredible achievements of their children with the correct medical support was astonishing & inspiring!

One of those mums lives close to where we used to live in Brazil, after speaking to her and seeing what is available there we made the decision to go for 5 weeks to see how Josie responds. This treatment is on power with that in the States but half the price. We have family & friends in Brazil so it makes a lot of things more cost effect also. We have been gifted our flights and will have accommodation for 3 1/2 weeks of our 5 weeks. We will be paying for all the treatment costs ourselves but friends & family have asked to help with transport & other costs. We will have to rent a car to get to Josies treatments everyday & will have 1 week and a half accommodation to pay.

We are so thankful to everyone who has been following our journey & wishes to support us in this specific journey. We are hoping to join a charity going forward and will be documenting all of Josie’s progress.

Above all we are thankful for your prayers for Josie, we believe in the power of prayer & have seen answers to many!