Amelia Saunders is a little 4 year old girl from my home town of Reading, Berks, UK. She was disagnosed in February last year with an inoperable brain tumour.
I was heartbroken this morning to read a statement from Amelia’s mother (in response to an inaccuracy in a Daily Mail article). She says:
“I want people to understand what my life is like right now – I have a child who wants me by her side 24/7, she can barely communicate with me and gets very frustrated all the time. She will not let anyone else feed her, dress her, give her medicines. I have to nurse her until her death, we have no idea how long that will be, in the mean time I just have to keep her as happy and comfortable as possible – read her stories, show her photos and talk to her about happier times.” (italics added by me).
When I first heard of Amelia’s plight, I was all ready to donate as her parents wanted to take her to the Burzynski Clinic in Texas, for which they required £200,000. I feel relieved that before I donated, I was pointed in the direction of some facts about Burzynski.
- His “treatment” is, in fact, a clinical trial…which has currently been going on for around 30 years – to me, “treatment” should mean just that – a treatment – not a trial.
- Participants in the trial are required to pay. A lot. Just to take part.I’m sure I was PAID to take part in the trials that I have done…
Don’t get me wrong, I have SO much sympathy for this family. As a mother myself, I can empathise with the desperation that they must have felt when told that their dear, sweet, beloved daughter had no options. But I feel angry for the people that Burzynski is tempting with his “miracle” treatment, which seems to not really work anyway. Relaible, peer reviewed publications are few and far between (ie non-existant). The “trial” seems not to be progressing at any great rate…
When Burzynski’s potential “quack” status was first pointed out to me, I watched the family’s FaceBook page with my heart in my mouth. I hoped beyond hope that those attempting to expose Burzynski were wrong. And in November, the family reported that the tumour appeared to be changing (for the better).
But tragically, now little sweet Amelia is in hospital and she is dying.
So I am adding another blog to the many blogs and articles already out there (a couple of links below) to beg families in these situations to reconsider lining Burzynski’s bulging pockets.
And I wish Amelia and her family peace and love in the time that they have left together.