Kaleigh Lau’s DIPG Childhood Cancer Battle

Foreword by Dr. Ken Fu (Kaleigh Lau’s uncle)

Thank you for taking the time to read this important message about my niece Kaleigh Lau. I hope to help raise funds and awareness into this rare childhood cancer with no cure at the current time.

Her parents Scott and Yang have been selfless and inspirational just like Kaleigh in trying to help push start the petition so that parliament would allow funding into DIPG. It is probably too late for Kaleigh’s cause but more so for other families that may find themselves in the same situation. Where they have to raise huge amounts of money to goto Mexico to have this pioneering IR treatment because it isn’t available on the NHS at the moment.

As stated below each trip ie. course of IR treatment costs £15,000 with ten courses needed it is a colossal amount of money to raise. The parents had to remortgage their house in order to fund the daughter’s IR treatment. Mum Yang has also sacrificed her accountancy job at a top London firm to care for Kaleigh. Leaving dad Scott to support the family working as a civil engineer whilst also tirelessly helping to funds with the help of team Kaleigh consisting of family, friends and the social media family circle. 

The Lau family return to Mexico once a month in order to continue the IR treatment for Kaleigh. Since April they have eight courses of treatment and are currently having their ninth one out there. Without this treatment Kaleigh wouldn’t of survived beyond the expectant nine month period. I hope you could look at the link to the parliamentary petition for funding into DIPG lodged by the Lau family, funding link and the various supporting patrons and fund raising event past and up coming.

Please look at her website where you can see many celebrities helping also to campaign for Kaleigh’s cause. Likes of Sir Mo Farah,Simon Cowell and Ronnie ‘The Rocket’ O Sullivan plus many more to mention. We would love the opportunity to help raise awareness and funds for Kaleigh. Her legions of fans are constantly organising events for her cause for treatment in Mexico and who ever meets or reads about Kaleigh cannot but fall in love with this 7year old who having been through a lot already stays resilient and strong but also caring and selfless for others. Her latest admirer is Chinese celebrity chef Ching He Huang who met her at a Chinese convention and now is a strong campaigner for K even helping her host a gala dinner on 18th November with other celebrity such as Kenny Thomas who’s daughter has the same condition too. Please can you kindly give this remarkable girl a mention as this would help her cause immensely as your platform would enable her to reach out to not but the few local regional coverage but to the millions of followers that read your wonderful newspaper.

If you require any further information please do not hesitate to contact me on the email above or on my mobile 07572248888 many thanks and best wishes. 

alt

Kaleigh Lau Profile

Kaleigh has been battling with this illness since April 2016, over 17 months ago, when the UK Doctors told us to go home to make memories as you’ll have approx 9 months left with your daughter.

This illness is called Diffused Intrinsic Pontine Glioma (DIPG) which is one of the worst types of brain tumours you can get, as it currently has no cure, inoperable, typically effects children between 4 & 12 and 99.9% will die within a median of 9 months.

Unfortunately Kaleigh exhausted all treatment options in the UK including the recommended radiotherapy which only prolongs life for circa 9 months, Experimental drugs and the privately funded CED treatment in London as she was denied at the 11th hour after the planning scan showed the tumour being outside of the area they believe they could control.

So exactly 1 year after diagnosis, we was in Monterrey Mexico having our first Intraarterial & Immunotherapy treatment. Kaleigh was the first patient outside of Mexico to have this combination and was the first European to take this step to finding a cure. How did we end up there, because this was our one and only hope as Kaleigh was deteriorating very quickly.

Now after 5 months of treatment, Kaleigh is still giving hope to other families and children. We was the 7th family to arrive, however there are now circa 45 and we would say approx half of the families who went over was because of Kaleighs blog. We are very proud of that as we opened up our family life to everyone.

As you can imagine these treatments do not come cheap, hence the need to continue to fundraise to ensure Kaleigh remains on this treatment. We have so far spent circa £225,000 and by Dec 2018 we have budgeted for a further £150,000 which would cover 10 Intraarterial treatments with accommodation and flights.

We really don’t know if this is the cure, but at least we have started to make a change to something which hasn’t changed for the last 60 years. This illness even affected Neil Armstrong the first man on the moon, as his daughter died from this in 1962 and can you believe it the recommended treatment hasn’t changed since then.

To force a change, team Kaleigh as started a governmental petition:

Link to petition we created:-

https://petition.parliament.uk/petitions/200017

Fund research into pediatric brain cancer & earlier access to experimental drugs

A classroom of innocent UK school children is dying every year to an incurable brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG), but globally over 200,000 children in the last 50 years have lost their lives to this death sentence of an illness. This needs to end & a cure needs to be found.

DIPG: 

• No cure to date 

• Mainly affect children between 4-12 years 

• Average survival time from diagnosis is 9 months. 

• Every 9 days a child in the UK is diagnosed 

• Survival rate +5 years: DIPG 1962-0% 2017-0% vs Leukaemia 1962-4% 2017-94% 

• Only 1% of the UK national spend on cancer research has been allocated to brain cancer.

ACTION: 

• Fund research into paediatric DIPG brain cancer 

• Earlier access to multi modal experimental drugs & delivery system 

• UK to be global ambassador for DIPG

Other links to Kaleighs story:

Please follow Kaleigh’s blog:

Link to story about Kaleigh and DIPG

3 July 2017 – Evening Standard

04 June 2017 – Daily Mail

alt
Click on image for event details.

(Visited 93 times, 1 visits today)