17 August 2023 | Our Work
The LCRIG team have kindly asked me to provide you with an update on my trip to the USA with my son, Simeon, and his beautiful daughter, Isla.
You might know that we have been planning this trip for quite some time, and now here we are. For those who know me you won’t be surprised to hear it has not been without its twists and turns. En route out a lady at the American Airlines desk confirmed we had missed our connecting flight to the USA from London but thankfully other AA staff stepped in to save the day and get us on board for the 8.5 hour flight. The day after arrival, one of Isla’s carers who had also come along to help out was given some personal news that meant she needed to return to the UK without delay, leaving just me, Sim and Isla at our Airbnb in Raleigh. For the first three days, the blazing sunshine reached a consistent 100 degF, making it unbearable to be outside for much more than a few minutes, and then came the monsoon – well heavy rain at least!
The day before the rain set in we were delighted to see a couple of old friends from HRS, Keith Dawson and Roger Poeth, who took a bit of a detour to stop by, so of course we did a BBQ. Roger and Keith were over here demonstrating their life-saving incursion warning systems to amongst others, major players like DeAngelo Contracting Services, who I had been fortunate enough to work with in the past. It’s encouraging to see the UK leading the way with our products and services – well done HRS, I believe it’s Canada next.
The people here in Raleigh, North Carolina have been nothing less than incredibly helpful and kind. We had a General Manager from Chipotle insist on buying us lunch after being so touched by Isla’s story and a lovely couple we met late afternoon the following day paying for our meal after coming to join us at our table – we could stop neither.
But now to the important stuff – we have just completed day 2 of Isla’s treatment and it has been a tremendous success.
In the lead-up to the treatment, we were warned that the percentage of live stem cells that had been taken from Isla’s little brother could be as low as 25% based on an initial sample, rendering any chance of success towards the lower end of the scale. However, we were delighted to learn that the viability was in fact 98% based on the full assessment only minutes before the infusion took place on Tuesday this week. Not only that, we had 22 million active stem cells per kg of weight for Isla with the target criteria being only 20 million. Isla has dealt with it all in her stride, and the clinicians have been first class, it was me who was feeling queasy watching the nurse take 6 full vials of blood from such a tiny person – well done Duke University Hospital.
By the time you are reading this we will be on our way home and over the coming months we pray we will see some change in Isla that will help to give her the better quality of life we all yearn for, for her.
Thank you to all of you who have so kindly made this all possible with your sponsorship, kind thoughts and prayers.
Image source: M Duffy