Alyssa's Fairy Wishes
Donation protected
Hi,
Thank you for visiting Alyssa's Go Fund me page.
Alyssa is a beautiful 10 year old girl, who suffers from Spinal Muscular Atrophy Type 1.
A devestating disease that robs children of the ability to move, swallow,smile, talk and eventually breath.
It is a genetically inherited Motor Neuron disease that SMA effects children (Around 1 in 6000) and is caused by a missing gene, SMN1, which is necessary to provide protein( SMN) to motor neurons in the spine. Without this protein, motor neurons in the spine slowly die, leading to severe muscle wastage and shortened life-span.
An estimated 1 in 40 people carry the mutated SMN1 Gene. If a couple who are both carriers have a child, they have a 25% chance of having a child with SMA.
There is currently no cure, or proven treatments to stop or slow the progression.
Alyssa has lost her ability to cough, swallow and move.
Due to Alyssa's disease she requires 24/7 medical care provided by either mum or dad. With two other boys to care for and mum working , this is very challenging for us.
We were told at diagnosis, Alyssa would not live see to her 2nd birthday. She has surpassed her prognosis and continues to battle her disease.
In doing so, our trailblazer has changed the way in which the Australian medical community now cares for patients with Spinal Muscular Atrophy.
We fought hard and proved to her Specialists at Melbourne RCH, that a machine called a Cough-Assist was a safe and effective way to help children with muscle weakness, clear mucus from their lungs. Not only helping improve their quality of life, but also prolonging their lives and allowing parents more time with their children.
After a Bronchoscopy was performed on Alyssa, her specialist was amazed at how well it worked. Her team at the RCH allowed us to purchase the first cough-assist in Australia.
Since then the number of cough-assists in Australia has grown. So too have the number of Charities with Cough-Assist programs now helping hundreds of patients and prolonging the lives of those affected with Motor Neuron Diseases.
We are so blessed to still have our little girl with us but as her disease is progressive and affects the lungs and heart, we dont know how long we have with her so we have always been very pro-active in providing our children the best quality of life doing our best to provide lots of happy and fun times.
Although Alyssa cant walk, crawl, sit up unassisted, eat or move her body, she maintains a postive outlook on life, always with a big smile on her face.
Everyday is a battle for Alyssa with maintaining clear airways and coping with profound muscle weakness. Alyssa is prone to regular chest infections usually resulting in ICU admissions as she struggles to maintain normal oxygen levels. When Alyssa is in ICU her Mum
has to take time off work to stay with her in ICU, usually without pay , whilst Dad looks after the boys.
We are trying our best to make Alyssa's dreams a reality, whilst also trying to meet the financial and emotional needs of her brothers and the cost of day to day living
With only one parent working and the other caring for Alyssa and her two brothers,Dylan, 14 and Joshua,4, we live week to week.
Some of the following items are Alyssa's wishes, whilst others are medical/equipment needs.
1. I am taking Alyssa to Katy Perry in December and she really wants to meet Katy Perry. I have no idea how to make this one possible, so any ideas, message me.
2. Alyssa loves to sing so number seven on her bucket list is to sing in front of the judges at Xfactor or the Voice Kids.
3. A Flowergirl at a wedding
4. An Eyegaze system to allow her to communicate with people via computer. Alyssa can't move and relies on us for everything. It would be beautiful if she could be more independant.
5. A new engine for our wheelchair converted car. Our current car is constantly braking down and is a reral money pit. The government only find one conversion per lifetime per child. That doesn't include the cost of the car. A new engine is a cheaper option than buying a new wheelchair accessible car.
6. A bathroom renovation as she has grown. Alyssa can't stand and is showered laying reclined in a chair. She barley fits in the shower and it won't be long before she cant fit anymore.
7. A shaded backyard area to enjoy
.
8. A modified xbox 360 controller so she can play games with her brothers.
9. An Air Pressure mattress as Alyssa cant roll over and gets sore throughout her body especially her boney areas such as the hips and shouldors. The government will help with $1200 but a mattress lik this is worth $4000
10. A donation toward research for a cure.
Thank you for taking the time to read Alyssa's bucket List.
Please follow Alyssa's Facebook page www.facebook.com/princessalyssak
We are so blessed to still have our little girl with us but as her disease is progressive and affects the lungs and heart, we dont know how long we have with her so we have always been very pro-active in providing our children the best quality of life doing our best to provide lots of happy and fun times.
Although Alyssa cant walk, crawl, sit up unassisted, eat or move her body, she maintains a postive outlook on life, always with a big smile on her face.
Everyday is a battle for Alyssa with maintaining clear airways and coping with profound muscle weakness. Alyssa is prone to regular chest infections usually resulting in ICU admissions as she struggles to maintain normal oxygen levels. When Alyssa is in ICU her Mum
has to take time off work to stay with her in ICU, usually without pay , whilst Dad looks after the boys.
We are trying our best to make Alyssa's dreams a reality, whilst also trying to meet the financial and emotional needs of her brothers and the cost of day to day living
With only one parent working and the other caring for Alyssa and her two brothers,Dylan, 14 and Joshua,4, we live week to week.
Some of the following items are Alyssa's wishes, whilst others are medical/equipment needs.
1. I am taking Alyssa to Katy Perry in December and she really wants to meet Katy Perry. I have no idea how to make this one possible, so any ideas, message me.
2. Alyssa loves to sing so number seven on her bucket list is to sing in front of the judges at Xfactor or the Voice Kids.
3. A Flowergirl at a wedding
4. An Eyegaze system to allow her to communicate with people via computer. Alyssa can't move and relies on us for everything. It would be beautiful if she could be more independant.
5. A new engine for our wheelchair converted car. Our current car is constantly braking down and is a reral money pit. The government only find one conversion per lifetime per child. That doesn't include the cost of the car. A new engine is a cheaper option than buying a new wheelchair accessible car.
6. A bathroom renovation as she has grown. Alyssa can't stand and is showered laying reclined in a chair. She barley fits in the shower and it won't be long before she cant fit anymore.
7. A shaded backyard area to enjoy
.
8. A modified xbox 360 controller so she can play games with her brothers.
9. An Air Pressure mattress as Alyssa cant roll over and gets sore throughout her body especially her boney areas such as the hips and shouldors. The government will help with $1200 but a mattress lik this is worth $4000
10. A donation toward research for a cure.
Thank you for taking the time to read Alyssa's bucket List.
Please follow Alyssa's Facebook page www.facebook.com/princessalyssak
Organizer
Julieanne Bugeja
Organizer
Kealba VIC
