Help Julianna's Fight Against FA
Donation protected
Dear friends and family and new friends we haven't yet met.
On September 22, 2014, our daughter Julianna was diagnosed with a progressive degeneration disease called Friedreich's Ataxia (Also known as FA, FRDA and the sister disease to ALS). I'm sure most of you are saying, What's Friedreich's Ataxia? So did we.
FA is a very rare debilitating, life-shortening, degenerative neuro-muscular disorder. Currently only 20,000 people in the entire world have been diagnosed with FA. FA is progressive and will affect more and more parts of Julianna’s body over time. It’s affected her balance, so she can’t always walk well and sometimes falls, her hands will shake and she can’t easily coordinated things like putting pegs into a peg board. It’s causing scoliosis in her spine and is already affecting her heart and this is just the beginning. It causes un-coordination of limbs and as time progresses it will affect her ability to speak, see and possibly hear it is known to cause diabetes. Because FA is an inherited disease, once one family member is diagnosed any other siblings has a 1:4 chance to inherit the disease as well. This means our other daughter is now at risk. Worse yet, FA currently has no cure and no effective treatments.
How do you process this kind of news about your child? Our hearts are constantly breaking with fear and the possibility that we may lose our little girl long before she ever gets the chance to experience life. We watch her suffer in pain and cry about her body not working and kids teasing her about the way she walks and it's killing us.
When we received the diagnosis, Julianna had just turned 11 only 2 weeks before. Our little girl has her whole life ahead of her. As a parent, you begin to ask yourself a million questions starting with – Why? Why my baby? Why not me instead? How can this be happening? To her? To our family? The answers to the questions never come… Instead, your whole world collapses as you try to process what’s going on. Your life has just changed forever and as a parent you are helpless, you cannot do those things parents do everyday, make the pain go away, tell your child don’t worry everything will be okay. Unfortunately, we can’t stop the pain and we can’t stop this debilitating disease from taking over her life – our life.
Every day for Julianna is different – she has good days and bad but our job as parents is to keep it together so that her life can continue as ordinarily as possible. One day she’s running around playing with the other kids, giggling, laughing and bursting with energy – and other days she barely has the energy or strength to stand up. Julianna is aware of the fact that one day she will have to be in a wheelchair. When she asked me that question, I remember thinking I have to be honest. When I told her yes that she would most likely be in a wheelchair at some point, I remember the look on her face…….. devastation. I swear I couldn’t breathe. She starting sobbing hysterically and as we cried together I thought to myself, how can I ask my child to deal with and understand the very things that I myself cannot comprehend and am unwilling to accept?
Although there is no cure for FA, there are clinical trials, stem cell options and new studies that continually emerge. The medical community has found some success in slowing down the progression of the heart damage but nothing yet to slow down the progression of the many other symptoms associated with the disease.
We want to do everything possible to try to help Julianna but we are overwhelmed at the thought of the expenses that are to come – the travel costs to other countries for new clinical trials, medicine, medical bills, modification of our home and car to accommodate her future wheelchair needs… The list goes on and on… But it is scarier to think about what Julianna’s fate might be if we do not prepare ourselves for the expenses she will inevitably require as time goes on.
We can’t get through this difficult time alone. We need help, and, as humbling as it is to say, we need your help. Any contribution you can make to help Julianna would be greatly appreciated – whether it is a monetary donation or simply sharing this link with your friends and family.
We are not at 501(c)3 organization so any contributions that are given are considered gift donations and are not tax deductible.
(For those of you who do not like to donate on-line you can donate at your local TD Bank, to Julianna A. Frontiero)
We appreciate all of you for taking the time to read this.
Thank you,
Tony and Debbie Frontiero
On September 22, 2014, our daughter Julianna was diagnosed with a progressive degeneration disease called Friedreich's Ataxia (Also known as FA, FRDA and the sister disease to ALS). I'm sure most of you are saying, What's Friedreich's Ataxia? So did we.
FA is a very rare debilitating, life-shortening, degenerative neuro-muscular disorder. Currently only 20,000 people in the entire world have been diagnosed with FA. FA is progressive and will affect more and more parts of Julianna’s body over time. It’s affected her balance, so she can’t always walk well and sometimes falls, her hands will shake and she can’t easily coordinated things like putting pegs into a peg board. It’s causing scoliosis in her spine and is already affecting her heart and this is just the beginning. It causes un-coordination of limbs and as time progresses it will affect her ability to speak, see and possibly hear it is known to cause diabetes. Because FA is an inherited disease, once one family member is diagnosed any other siblings has a 1:4 chance to inherit the disease as well. This means our other daughter is now at risk. Worse yet, FA currently has no cure and no effective treatments.
How do you process this kind of news about your child? Our hearts are constantly breaking with fear and the possibility that we may lose our little girl long before she ever gets the chance to experience life. We watch her suffer in pain and cry about her body not working and kids teasing her about the way she walks and it's killing us.
When we received the diagnosis, Julianna had just turned 11 only 2 weeks before. Our little girl has her whole life ahead of her. As a parent, you begin to ask yourself a million questions starting with – Why? Why my baby? Why not me instead? How can this be happening? To her? To our family? The answers to the questions never come… Instead, your whole world collapses as you try to process what’s going on. Your life has just changed forever and as a parent you are helpless, you cannot do those things parents do everyday, make the pain go away, tell your child don’t worry everything will be okay. Unfortunately, we can’t stop the pain and we can’t stop this debilitating disease from taking over her life – our life.
Every day for Julianna is different – she has good days and bad but our job as parents is to keep it together so that her life can continue as ordinarily as possible. One day she’s running around playing with the other kids, giggling, laughing and bursting with energy – and other days she barely has the energy or strength to stand up. Julianna is aware of the fact that one day she will have to be in a wheelchair. When she asked me that question, I remember thinking I have to be honest. When I told her yes that she would most likely be in a wheelchair at some point, I remember the look on her face…….. devastation. I swear I couldn’t breathe. She starting sobbing hysterically and as we cried together I thought to myself, how can I ask my child to deal with and understand the very things that I myself cannot comprehend and am unwilling to accept?
Although there is no cure for FA, there are clinical trials, stem cell options and new studies that continually emerge. The medical community has found some success in slowing down the progression of the heart damage but nothing yet to slow down the progression of the many other symptoms associated with the disease.
We want to do everything possible to try to help Julianna but we are overwhelmed at the thought of the expenses that are to come – the travel costs to other countries for new clinical trials, medicine, medical bills, modification of our home and car to accommodate her future wheelchair needs… The list goes on and on… But it is scarier to think about what Julianna’s fate might be if we do not prepare ourselves for the expenses she will inevitably require as time goes on.
We can’t get through this difficult time alone. We need help, and, as humbling as it is to say, we need your help. Any contribution you can make to help Julianna would be greatly appreciated – whether it is a monetary donation or simply sharing this link with your friends and family.
We are not at 501(c)3 organization so any contributions that are given are considered gift donations and are not tax deductible.
(For those of you who do not like to donate on-line you can donate at your local TD Bank, to Julianna A. Frontiero)
We appreciate all of you for taking the time to read this.
Thank you,
Tony and Debbie Frontiero
Organizer
Debbie Randazza Frontiero
Organizer
Gloucester, MA
