Saving Alexia - Our Last Chance
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Thank you in advance for your support. Currently our Go Fund Me is showing $62,000, however due to expences and treatment in Germany our balance is $14,000. Therefore we have a long way to go. Sometimes when we feel overcome with hopelessness, we are heartened and strengthened by messages and support that comes to us through the kindness of others, often perfect strangers.
My name is Hayley and I have a 5-year-old daughter named Alexia. In early 2014 Alexia was diagnosed with a brain tumor called (DIPG). This cancer predominately affects children and we found the limited treatment was palliative at best. She was two. We were informed that life expectancy after diagnosis is 9 months. She immediately underwent 6 weeks of an adult dose of daily radiation on her tiny brain, including a general anaesthetic each time to try to shrink this aggressive cancer. The radiation seemed to be successful as the tumor shrunk and had no growth for the next 18 months. However, after a routine MRI, it was revealed that it had started to show growth. Doctors informed us that there is currently no further treatment within Australia for DIPG. It was suggested that we ‘enjoy time with Alexia’ as there was nothing more that could be done. We knew that death would be a relief from the very cruel toll the tumor would inflict. We knew we would have to watch her struggle to breath, see and hear, then lose the use her limbs and eventually she would choke to death. This news was obviously devastating and we simply weren’t willing to give up.
After searching desperately all around the world for treatments, we found a clinic in Germany that had proven positive results with many DIPG patients, including Australian families we spoke to. This treatment is called hyperthermia, which includes complimentary treatments also, such as various infusions, magnetic therapy, physiotherapy and immune therapies.
I travelled to Germany with Alexia, leaving behind my two year old son and partner for this treatment, in the desperate hope to save my child. Upon returning to Australia, the tumor seemed to be ‘changing’ albeit slowly. Therefore, a second trip to Germany was needed. This treatment was very expensive and we had already used all the savings we had and were also supported by Alexia’s Go Fund Me appeal. But the German newspaper The BILD interviewed us and found a sponsor for Alexia to cover the second round of treatment.
Upon returning to Australia we have been informed that the tumor is still showing subtle growth. We know we have bought precious time and these treatments have brought us to where we are now, far beyond the expectations of her Doctors. This has given us renewed and great hope for the future. However, despite all efforts the latest scan has shown subtle growth once again in the tumor. We now need to try something new. There is a treatment currently being used in London called CED that is very promising. There has been a lot of media coverage of this treatment as great results have been shown on other patients with DIPG so far. The first obstacle for us has been to be accepted, as you might imagine, a long line of families from all around the world are desperate for access to a treatment that works. We have been desperately applying and were thrilled hear alexia has been accepted on compassionate grounds. However, this treatment is invasive, requiring brain surgery and the cost is prohibitive at an estimated at 86,000 pounds, ($142,000 AUD). We know she has a very great chance of survival given this treatment and doctors are ready to treat her, but we simply do not have the funds. We are now desperately seeking to raise the amount needed and are asking for help from anyone who is willing and able, so that Alexia can receive this life saving treatment. If you require any more information or supporting documentation, please do not hesitate to ask.
Sincerely yours Hayley keeping
My name is Hayley and I have a 5-year-old daughter named Alexia. In early 2014 Alexia was diagnosed with a brain tumor called (DIPG). This cancer predominately affects children and we found the limited treatment was palliative at best. She was two. We were informed that life expectancy after diagnosis is 9 months. She immediately underwent 6 weeks of an adult dose of daily radiation on her tiny brain, including a general anaesthetic each time to try to shrink this aggressive cancer. The radiation seemed to be successful as the tumor shrunk and had no growth for the next 18 months. However, after a routine MRI, it was revealed that it had started to show growth. Doctors informed us that there is currently no further treatment within Australia for DIPG. It was suggested that we ‘enjoy time with Alexia’ as there was nothing more that could be done. We knew that death would be a relief from the very cruel toll the tumor would inflict. We knew we would have to watch her struggle to breath, see and hear, then lose the use her limbs and eventually she would choke to death. This news was obviously devastating and we simply weren’t willing to give up.
After searching desperately all around the world for treatments, we found a clinic in Germany that had proven positive results with many DIPG patients, including Australian families we spoke to. This treatment is called hyperthermia, which includes complimentary treatments also, such as various infusions, magnetic therapy, physiotherapy and immune therapies.
I travelled to Germany with Alexia, leaving behind my two year old son and partner for this treatment, in the desperate hope to save my child. Upon returning to Australia, the tumor seemed to be ‘changing’ albeit slowly. Therefore, a second trip to Germany was needed. This treatment was very expensive and we had already used all the savings we had and were also supported by Alexia’s Go Fund Me appeal. But the German newspaper The BILD interviewed us and found a sponsor for Alexia to cover the second round of treatment.
Upon returning to Australia we have been informed that the tumor is still showing subtle growth. We know we have bought precious time and these treatments have brought us to where we are now, far beyond the expectations of her Doctors. This has given us renewed and great hope for the future. However, despite all efforts the latest scan has shown subtle growth once again in the tumor. We now need to try something new. There is a treatment currently being used in London called CED that is very promising. There has been a lot of media coverage of this treatment as great results have been shown on other patients with DIPG so far. The first obstacle for us has been to be accepted, as you might imagine, a long line of families from all around the world are desperate for access to a treatment that works. We have been desperately applying and were thrilled hear alexia has been accepted on compassionate grounds. However, this treatment is invasive, requiring brain surgery and the cost is prohibitive at an estimated at 86,000 pounds, ($142,000 AUD). We know she has a very great chance of survival given this treatment and doctors are ready to treat her, but we simply do not have the funds. We are now desperately seeking to raise the amount needed and are asking for help from anyone who is willing and able, so that Alexia can receive this life saving treatment. If you require any more information or supporting documentation, please do not hesitate to ask.
Sincerely yours Hayley keeping
Organizer
Hayley Keeping
Organizer
Gulfview Heights SA
