We will keep this page updated with news about Amelia’s current condition and how the fundraising is going.
The website is launched! Today we have launched this website, www.ameliasmiracle.com, to allow everybody to see how our courageous little girl has a hope for survival of this terrible disease that is slowly killing her. She doesn’t know it yet but we are hoping to take her to the Burzynski clinic in Texas as soon as the funds allow us to start the initial consultation and treatment. We will have the donation site up and running very shortly.
We just wanted to say a HUGE thank you to everybody who has donated so far, we have received many donations via Paypal and these are all going to help get Amelia to Texas. We are speaking to the local newspaper (Reading Chronicle) who are looking at publishing our story, and everybody is chipping in to help with posters, letters, all sorts. Fantastic! Amelia is confusing the doctors here as she continues to be strong and has actually got better since her operation. We are looking at a new option of chemotherapy for her but not really sure if it will do anything to help her. We'll keep you all posted.
5th March 2012
Several things have happened in the last few days. Firstly as of this morning we have £21,600 in donations which is absolutely amazing (thank you to everybody who has contributed). There are several fund raising efforts going on and we'll try to add details of these to the website over the next few days. Chantal, Amelia and I are being filmed tomorrow for a new documentary on Dr Burzynski's clinic by Eric Merola, and we are going to meet several other UK patients who have been treated there. So truly inspirational stories.
8th March 2012
Things are happening fast here! Firstly Amelia is still OK. When she wakes up in the morning it looks like she has a little paralysis in half her face - it soon goes, but the poor little girl looks really sad when she first wakes up next to us in the morning! The good news is that she is due for another MRI scan in the next few weeks. As soon as this is complete I will be shipping the scan images on CD straight to the Burzynski clinic. Within a week or so of this we will be travelling to Texas. We have raised enough money to complete the first month of treatment in Texas, so we decided that as time is not on our side, we would get Amelia over there and start this. The ongoing fundraising will then pay for the treatment back home (mainly the antineoplaston drugs that have to be made in Houston and shipped here). We are hoping to fly to Texas either on the 16th or 23rd March so that we can have a weekend to recover from jet lag, then start the treatment the following Monday. Fingers crossed.
Chantal, Amelia and I all went into London on Monday evening to be filmed for the documentary. We met other patients who have been to the clinic, one of whom (Laura - http://www.hopeforlaura.co.uk) has had her tumour shrunk by 77% using this therapy. Bizzarely the sceptics seem to call this a 'spontaneous remission' of the tumour. Chantal and I have been amazed at how many people just don't seem to believe this treatment does anything. We have met and spoken to people who are either on the treatment (with noticeable results) or have been cured by it. They aren't paid by the clinic, they aren't actors, they are real people. I can only assume that some people are afraid of things they don't understand. We have tried to focus on the important thing - giving our little girl a fighting chance.
There are a number of fundraising events coming up and we are in the early stages of discussing a charity ball for when we return from Texas. Fundraising events will be publicised via the Facebook page currently, I will in due course post them on this website.
We cannot thank everybody enough for their generous support of what we are trying to do. We have had messages from all over the world, from people in all walks of life. The bottom line is whether we succeed or not in this, we are human beings, and we are parents, and we are trying to do the best we can for our daughter, and her little sister Charlotte, so that they can both grow up together and live a happy life as any other child should.
Thank you all so much for helping us to try to make this a reality. Once this is all over we will work tirelessly to make it happen for other people too.
10th March 2012Today Chantal, Amelia, Charlotte and I all went to Exeter to meet Billie Bainbridge and her family (http://www.billiebutterflyfund.org). Billie is 4 and a half months into antineoplaston treatment from the Burzynski clinic for the same tumour type as Amelia.. She also had radiotherapy at the start of her treatment at the same time as her mother Terri was being treated for breast cancer. They are truly an inspirational family and we are so pleased they invited us down to meet them all. We heard several positive stories about patients about the clinic as well as looking at all the equipment we'll need to maintain the treatment with Amelia when we get home.
Thanks again to Billie, Terri, Sam and Joe.
11th March 2012
We just wanted to say a HUGE thank you to Chantal's sister Leanne for raising £1247 at the Canford Park car boot sale today. Leanne and a whole group of friends did an absolutely amazing effort selling toys, clothes and anything else they could find and all proceeds made will pay for Amelia's treatment. We cannot thank you enough for this!
20th March 2012
Our flights are booked for Friday to Houston (thank you again Esther!), we'll be arriving there in the afternoon their time. So much effort has gone into making this happen. We cannot thank everyone enough, it is truly amazing.
Amelia had another MRI scan today, this will be with the clinic in Houston on Thursday morning so they can apply for FDA special exemption from the clinical trial - this effectively means we are legally OK for Amelia to have the antineoplaston treatment. Her Hickman line is also in. We are good to go!
Amelia continues to be strong and is doing well. Fingers crossed everyone, please keep praying for us.
25th March 2012
We are in Houston! We all arrived here on Friday (less Charlotte, she is staying with her grandparents!). We have a really lovely apartment and hire car, these were kindly provided by Dialaflight http://www.dialaflight.co.uk - thank you so much to Ben for organising this for us! The apartment is huge - we have a massive bed that Amelia can sleep in with us, and a nice park just up the road, a supermarket nearby, and lots of places that we can drive to. We are meeting some people here later who have got in touch via Facebook.
Tomorrow we start at the Burzynski clinic. Chan and I are really anxious, so much has been done to get us here and we don't know quite what to expect - we just have all the hope in the world that the least they can do is give us some more time with Amelia. She is completely oblivious to the whole thing and is enjoying her special holiday!
I will update in a few days once we have had some time at the clinic.
10th April 2012
I realised I hadn't updated the news section here for a few weeks, this is largely because we update our Facebook page daily and much of our time has been taken up going to and from the clinic. Every day has been a bit of a rollercoaster here. Amelia has been on antineoplaston treatment for a week and a half and at the end of last week we hit a bit of a wall with the treatment dosage. Amelia got pretty sick so we had to back down on the dose a little. Yesterday she started getting really bad headaches so we have now also put her on a low dose steroid as well. Other than this, she is doing well and responding well to treatment. We think there are some very slight improvements in her coordination of her left hand side. We are continuing the treatment, and the aim is now to increase the dosage more slowly to see how she responds. All in all we are doing well and looking forward to coming home soon!
4th May 2012
Well we have now been back from Houston for a few weeks - and Amelia has continued to slowly improve with both her walking and speech getting better. The Burzynski clinic were brilliant - we were made to feel so welcome and Amelia really made an impression on everybody there!
We had an MRI scan on Monday that revealed her tumour has stopped growing. Considering she has had no treatment other than the antineoplaston therapy from the Burzynski clinic, we are really pleased (and impressed) that the treatment seems to be working so quickly. We are now continuing the treatment and increasing her dose such that we try to get her to the 'target' dose for her weight.
Every day we continue to update our facebook page http://www.facebook.com/ameliasmiracle. We have over 3,000 people following us on the page and the feedback is incredible.
Thank you to everybody who has supported us so far - the fundraising has been incredible and we continue to pray for Amelia's recovery.
25th May 2012
We have met our £200,000 target! This is phenomenal news and it means that we can now continue Amelia's treatment, if successful, for a good few years and get her on the road to recovery. We have all our fingers crossed that this will work. Amelia has had some complications with her Hickman line over the last few weeks and yesterday she unfortunately had to have it replaced - which is quite a major amount of work and she is now recovering from her general anesthetic. She now has even more scars! She is doing well otherwise, and we'll be resuming her treatment tonight. She is now walking by herself, her coordination and balance have all improved and her speech is much better. It looks like the treatment is definitely helping her.
1st June 2012
Amelia is now back on her full treatment and we are almost at her target dose for both drugs - she is doing really well and continues to slowly improve. Tomorrow it is her birthday, which is a day we thought we would never get to, and she is having a little party to celebrate. We are continuing to fund raise beyond the initial £200,000 target so that we can pay for Amelia's treatment beyond 2 years + as we now know the treatment may be quite long term if successful.
7th July 2012
Well it has been a while since we updated the website! We still try to update the Facebook page daily. Amelia continues to do really well and she has been going to her nursery school as often as possible. She is now looking forward to starting reception at school in September. This is fantastic news and we are so incredibly pleased to have her here with us and doing so well. We had a scan a few weeks ago that showed her tumour is stable, which is fantastic, and we will continue with her treatment from the Burzynski clinic to try to shrink the tumour. Our fundraising has gone well beyond our initial target, now at over £230,000, which is allowing us to treat Amelia beyond two years (which the target was set for) as well as now looking at some nursing/ childcare help for Amelia when she is at school. This will allow us to have some normal 'home life' and Amelia can enjoy time at school with some normality also.
4th October 2012
It has been a long few months - but Amelia started school at the beginning of September and seems to be doing well. She loves her school, loves being with her friends, and is generally enjoying life as much as she can. We are continuing with the treatment - Amelia had a scan in mid August that showed her tumour remains stable, and although we have good weeks and bad weeks with her, she is doing very well considering the diagnosis back in February this year.
22nd November 2012
We've had some really good news - Amelia's tumour appears to have cysts forming inside the tumour itself, which is indicative of the cancer cells breaking down inside. Although early days, it is one of the first pieces of positive news we've had on our long journey. Thankfully, our efforts seem to be finally paying off. You can continue to follow our progress via our Facebook site which we update several times a week.
28th December 2012
Sadly Amelia has been deteriorating for some time and we discontinued the antineoplaston treatment a few weeks ago. We are now under palliative care via our local team at the Royal Berkshire Hospital and also at Naomi House hospice near Winchester. Thank you to everyone who has supported us. Amelia will live on in our hearts, forever.