Eleanor's Miracle Treatment
Donation protected
Our beautiful little girl Eleanor is 7 months old whom has been diagnosed with Spinal Muscular Atrophy (SMA1) a rare disease of the spine, neurons and muscles. Eleanor suffers from type 1 which is the most severe form of this disease. The motor nerve cells in Eleanor's spinal cord takes away Eleanor's ability to perform basic physical movements such as lifting her head, arms and legs, sitting up, drinking her bottle, eating solids and breathing.
Eleanor needs Zolgensma which is a one off treatment that costs $3 million AUD. Zolgensma is only available in the USA. While there is no cure for Spinal Muscular Atrophy, gene therapy can greatly increase Eleanor's quality of life, her motor skills will improve, she may be able to walk if gene therapy is administered before December 2021. Without full treatment Eleanor has been given by the doctors 2 years to live. We can't afford the treatment and need all the help we can get to save our 7 month old girl.
Every little act people take will help, even if it's just donating $5 or taking the time to share Eleanor's fundraiser across social media. We will forever be grateful if you can help us reach our goal and save our little Eleanor's life, we want to give her the best quality of life possible and to have a normal life which Zolgensma will be able to give her if the gene therapy drug is administered before Eleanor is 2 years old.
We have no other alternative but to use this platform to address this serious life threatening condition.
Thank you so much
Eleanor's Story
Our little girl Eleanor was born on the 10/01/2020, it was the happiest day of our lives. This was the moment we had been waiting for, to gaze our eyes upon our baby for the very first time whom we have waited so long to meet and the moment we set our eyes on her our hearts melted and we knew our family was complete.
We started to get worried when we noticed Eleanor was not physically moving as much as other babies her age. Eleanor wasn't meeting her milestones at 4 months old. We made an appointment to see a paediatrician, this appointment was a 2 month wait.
When we did eventually see the paediatrician he was extremely worried for Eleanor and organised an emergency appointment at the Royal Children's Hospital.
The following morning at our hospital appointment the neurologist explained Eleanor could have SMA type 1 (she was 95% sure she had it) but we thought Eleanor might of been a slow learner or slow developer and we all wanted to believe that. The Neurologist urgently ordered lots of extensive tests to be done.
Eventually the results came back on 29/07/2020 confirming Eleanor's diagnosis of Spinal Muscular Atrophy (SMA1). This was the worst day of our lives and looking over at Eleanor it was very hard for us to comprehend the situation we are absolutely devastated of the diagnosis. Our world had just broken into a million pieces, and our heart's too. Now not knowing if Eleanor will ever be able to make it past her 2nd birthday without gene therapy is the worst thing you could ever mentally and emotionally deal with. Your children should be outliving you not the other way around. All we want and really need help with is to get gene therapy (Zolgensma) for Eleanor to give our little girl the best life she could possibly have.
Eleanor’s cognitive abilities are unaffected by SMA. Eleanor know’s her name and responds by looking at you or smiling when you call her. Eleanor’s memory processes such as thinking, judgement of character and remembering is not impaired. Eleanor know’s who everyone is and she loves socialising. She is a very alert and observant little baby, she loves music, colours and shapes. Eleanor wants to play and interact but physically is not able to with her condition until she is able to get gene therepy.
Eleanor has received her first dose of another treatment called Spinraza on the 30/07/2020 through a lumbar puncture at the Royal Children's Hospital. We remain hopeful that Spinraza will extend Eleanor's life expectancy and allow Eleanor to gain a degree of control over her mobility giving her a better quality in everyday life. However Spinraza alone is not sufficient enough for the severity of Eleanor's SMA and doctors have mentioned Eleanor will need respiratory and feeding intervention to survive. She is already struggling with her breathing, coughing and issues swallowing solid foods. http://www.sbs.com.au/news/world-s-most-expensive-drug-costs-3-million-for-a-one-off-treatment
Eleanor needs Zolgensma which is a one off treatment that costs $3 million AUD. Zolgensma is only available in the USA. While there is no cure for Spinal Muscular Atrophy, gene therapy can greatly increase Eleanor's quality of life, her motor skills will improve, she may be able to walk if gene therapy is administered before December 2021. Without full treatment Eleanor has been given by the doctors 2 years to live. We can't afford the treatment and need all the help we can get to save our 7 month old girl.
Every little act people take will help, even if it's just donating $5 or taking the time to share Eleanor's fundraiser across social media. We will forever be grateful if you can help us reach our goal and save our little Eleanor's life, we want to give her the best quality of life possible and to have a normal life which Zolgensma will be able to give her if the gene therapy drug is administered before Eleanor is 2 years old.
We have no other alternative but to use this platform to address this serious life threatening condition.
Thank you so much
Eleanor's Story
Our little girl Eleanor was born on the 10/01/2020, it was the happiest day of our lives. This was the moment we had been waiting for, to gaze our eyes upon our baby for the very first time whom we have waited so long to meet and the moment we set our eyes on her our hearts melted and we knew our family was complete.
We started to get worried when we noticed Eleanor was not physically moving as much as other babies her age. Eleanor wasn't meeting her milestones at 4 months old. We made an appointment to see a paediatrician, this appointment was a 2 month wait.
When we did eventually see the paediatrician he was extremely worried for Eleanor and organised an emergency appointment at the Royal Children's Hospital.
The following morning at our hospital appointment the neurologist explained Eleanor could have SMA type 1 (she was 95% sure she had it) but we thought Eleanor might of been a slow learner or slow developer and we all wanted to believe that. The Neurologist urgently ordered lots of extensive tests to be done.
Eventually the results came back on 29/07/2020 confirming Eleanor's diagnosis of Spinal Muscular Atrophy (SMA1). This was the worst day of our lives and looking over at Eleanor it was very hard for us to comprehend the situation we are absolutely devastated of the diagnosis. Our world had just broken into a million pieces, and our heart's too. Now not knowing if Eleanor will ever be able to make it past her 2nd birthday without gene therapy is the worst thing you could ever mentally and emotionally deal with. Your children should be outliving you not the other way around. All we want and really need help with is to get gene therapy (Zolgensma) for Eleanor to give our little girl the best life she could possibly have.
Eleanor’s cognitive abilities are unaffected by SMA. Eleanor know’s her name and responds by looking at you or smiling when you call her. Eleanor’s memory processes such as thinking, judgement of character and remembering is not impaired. Eleanor know’s who everyone is and she loves socialising. She is a very alert and observant little baby, she loves music, colours and shapes. Eleanor wants to play and interact but physically is not able to with her condition until she is able to get gene therepy.
Eleanor has received her first dose of another treatment called Spinraza on the 30/07/2020 through a lumbar puncture at the Royal Children's Hospital. We remain hopeful that Spinraza will extend Eleanor's life expectancy and allow Eleanor to gain a degree of control over her mobility giving her a better quality in everyday life. However Spinraza alone is not sufficient enough for the severity of Eleanor's SMA and doctors have mentioned Eleanor will need respiratory and feeding intervention to survive. She is already struggling with her breathing, coughing and issues swallowing solid foods. http://www.sbs.com.au/news/world-s-most-expensive-drug-costs-3-million-for-a-one-off-treatment
Fundraising team (3)
Stephanie Abel Layton
Organizer
Brighton East VIC
Bradley Nichols
Team member
Tiffany Layton
Team member
