We are more than a year into Kaleigh’s DIPG diagnosis, the year has seen a lot of changes. To the family, the stress and worry has been relentless. For the best of the last 12 months, Kaleigh has been stable, and relatively symptom free, we aren’t sure if this is because of the TCM approach, or maybe an early diagnosis which allowed Kaleigh to start her Radio Theraphy sessions early.
During this time, Scott had been pushing on all fronts in the UK to raise the awareness in the public realm, garnered the support of politicians, and taken it all the way to parliament. Support even coming in from media personalities as far as Hong Kong.
We thought we were bearing fruits to our labour when we finally managed to bring the CED treatment to London, and got a spot on a compassionate trial, however in the final MRI scan before the procedure, Kaleigh’s condition had seen some negative changes and Kaleigh was subject to ReRadioTherapy.
Even up till recently, a second round of radiotherapy was not always considered a route, but it is now a more common approach in the fight against DIPG. But after the treatment, and a further MRI, Kaleigh was still considered unsuitable for CED by the leading Doctors, professors and consultants in this field. Within the UK, no further options are left now that CED is no longer a viable option.
Team Kaleigh had placed the focus on the CED procedure for much of the last 6 months, and fund raising efforts were always targeting the CED route, even this was never clear until early 2017.
We always had an eye on other developments happening around the world, France, Germany, USA, Australia to name but a few. We were left with seeking opportunities abroad, but this brings a whole new level of finance required.
Whilst in the UK, Yang took to full time caring for Kaleigh and Carson, and the main costs would be the hospital treatment and the TCM. This was already anticipated to be a sum in excess of GBP200,000.
But, after much research Kaleigh is going to Mexico, Monterray to be part of some pioneering treatment, that seems to show some signs of positive results. It’s far from a cure, but for an illness that has no cure, this is after much research and consideration seems to be the best move.
“This was not an easy decision but we brought Kaleigh into this world and we will continue the fight to give Kaleigh what she deserves (a Chance in life)”
“To Kaleigh, she is going to Mexico for a family holiday with visits to the doctors to have scans to help with the little lump”
“This may seem like a knee jerk reaction to some, but people that know me understand i put everything into perspective then make an informed decision based on what i have and what we as a family believe is right. Unfortunately on this occasion i am flying by my pants a bit, as there are still many risks and still many unknowns, but what have we got to lose.”
Both Scott and Yang have stopped working to take care of Kaleigh, and they are taking Carson with them to Mexico for a few months to continue her treatment.
This is costly exercise, without NHS backing, this is completely self funded, financially things are getting tight.
We understand the treatment will be every 3 weeks at a cost of circa US$20,000 (£16,000) a course and of 10 to 15 courses are anticipated. Needless to say, travel, accommodation, food, and other costs will add to the total expenditure.
We really are not sure of how long Kaleigh will need to be out there for but would appreciate any help you can give.
Yang and Scott will no longer be working for a period of time and if you can think of any fundraising ideas or know someone wealthy and would like to sponsor us in any shape or form we would be very grateful of that.
We will update the fundraiser page and associated websites as and when we can. Support Kaleigh and support the petitions that are pushing for research into a cure for this illness.