Like most other five year old girls, Tilly loves princesses, and when it comes to being cute, funny, clever and cheeky, she truly outmatches them all. As well as all the girly things in life, such as dressing-up and playing with dolls, Tilly also loves going to school, swimming, and climbing any frames she can get her hands on. As you can guess, Tilly is a highly spirited little girl who loves spending time with her family and friends. Her presence is always known when she enters the room, which usually results in a cheeky smile or laugh. If you know this little girl, she will touch your heart, as I know she has already touched and even stolen a lot of others. Tilly deserves to make her own fairy tale come true, and we will help her achieve this.
The beginning of the battle
Sadly, a couple of months ago, some small changes in this little girl's body started to appear. She was taken to the doctors due to her right eye squinting, but nothing seemed wrong and she was prescribed glasses. She then slowly developed weakness on the left side of her body, and on May 24th 2016, after a sleepless night of experiencing severe headaches, Tilly was taken to hospital for a preliminary CT scan, which suggested there was something in her brain.
On June 8th, after having undergone a biopsy in the previous week, the worst news of our lives was received: wee Tilly was diagnosed with DIPG - Diffuse Intrinsic Pontine Glioma - a devastating and highly aggressive brain tumour found on the brain stem, making it impossible to be surgically removed. According to the doctors, the prognosis for DIPG patients is roughly 1 year.
The "incurable" disease
We will never be ready to lose Tilly, and we won't. Neil Armstrong lost his daughter to this terrible disease in 1962, as have countless other families since. How is it possible that DIPG survival rates still stand at 0%? For too long there has been too little funding and research into childhood brain cancer. Just because the annual statistics show that there are considerably less children diagnosed with conditions such as DIPG compared to the more common cancers in adults, does not mean to say that they should be ignored.
I know Tilly is the miracle child, we have to believe it, and we will help her show this to the world. At the moment, there could be a chance through clinical trials, alternative treatments and other non-common solutions. We have been in touch with specialists around the world, in LA (US), Boston (US), Bristol (UK), Sydney (Australia), Paris (France), Barcelona (Spain) amongst others, and we are hoping that Tilly meets all the criteria to qualify for any of the treatments that these doctors offer - as long as we hope, we can believe and achieve.
Fundraising for Tilly's treatment
Please help us raise as much as we can to help Tilly get the treatment she so desperately needs as soon as possible.
We have been doing our own research with regards to finding the right treatment for Tilly and after weeks of searching online and contacting specialists worldwide, we believe there is one in particular that will give Tilly the best fighting chance she so desperately needs. The treatment we have decided upon will be a combination of targeted gene therapy and antineoplastons. Unlike conventional cancer treatments such as chemotherapy or radiation, this treatment targets tumor cells through more natural methods. When the body does not have enough antineoplastons, cells that begin to develop abnormally are not corrected, and tumors form and grow. It is proven that antineoplaston therapy supplies the body with the substances needed to correct the abnormal development of the cell and allow it to develop normally or to die a natural cell death, while healthy cells are not affected. Another advantage that antineoplaston therapy holds over most conventional cancer treatments, is the absence of such devastating side effects. As you know, the official prognosis for DIPG stands at roughly 1 year, which has 0.9% cure rate. However, we have witnessed proof that antineoplastons and targeted gene therapy have not only prolonged the life of DIPG patients, but have in fact "cured" a number of them, with some 20 to 30 year survivors who are currently living normal healthy lives. Of course, there is still a substantial risk involved with this treatment, due to the aggressive nature of DIPG. Having learned all of this, we are feeling positive that Tilly stands a much better chance of having positive results from treatment.
There is currently only one place where the treatment is available, which is located in Texas (US). We have already traveled to the clinic and made all the necessary arrangements to proceed with Tilly's treatment. We are required to remain here with Tilly for a minimum of 1 month, which could be considerably longer depending on how well Tilly responds to treatment. Antineoplastons are delivered by inserting a catheter into a vein which is continuously fed with the use of a pump. We will eventually continue Tilly's treatment from home, which could take more than two years to complete.
Our target currently stands at £100,000. However, the treatment that Tilly will now undergo shall cost a minimum of $17000 per month, which may eventually increase substantially, due to the additional medication that Tilly would require on a regular basis. We are incredibly grateful for all of the fundraising and support we have received since Tilly's diagnosis. Every penny that's being donated is bringing us a step closer to a potentially much longer and healthier life for wee Tilly.
Petition to fund more research into DIPG brain tumours
In addition to this, if you are a UK citizen, I urge you to copy this petition link and share it with your friends and social circles. It's a very quick process and you will already be making a huge difference to all the families of children that have suffered, and are suffering from DIPG, and of course, to our future generation.
This petition was set up by a recent friend of ours, who is unfortunately currently fighting the same battle with his young daughter, Kaleigh Lau.
We cannot thank you enough for all the support that our friends and friends of friends have already shown. At this moment in life, yes, we sound desperate, but we are, and DIPG needs a cure ASAP. I am writing this on behalf of my partner, Lewis Simpson, who is Tilly's dad. I do love this little girl, and in case you don't know, she really is a true princess, and you would only agree with me if you met her.