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Help thirteen-year old Mia walk again
Mia has fought her way through life with every breath in her body since day 1.
Being born with a complex heart condition, she had two open heart surgeries as a baby and was put on a heart transplant list at age of 7.
After a long wait of over four years, Mia had her heart transplant in October 2017 but things didn’t go as well as we hoped: Mia had to fight her way back through 6 months in ICU on life-support, two more open heart surgeries (bringing the total to five), a bleed in her brain followed by an emergency brain surgery. As a result, Mia has been left battling paralysis in her right side.
All Mia dreams of is to go back to school on her own and to play ukulele again.
She is fighting the effects of stroke with every fiber of her being, and has made progress, but she needs help.
We made a contact with Rehabilitation Centre pioneering the use of robotics in children and young adolescent rehabilitation with outstanding results.
We are trying to collect the funds to help us start Mia’s rehabilitation in the summer of 2021.
The cost of a six-month program is 40,000 Euros. This excludes travel and accommodation expenses.
Thank you for your support!
Mia’s full story is below.
Diagnosis
Mia was born on April 11th, 2006 and came home 5 days later.
Things seemed calm and normal until the 20th of April when Mia suddenly collapsed - we knew very little about what was happening when a nurse grabbed her from us and rushed her into a resuscitation room. Throughout the next three, long hours, doctors fought to stabilize her. Mia was then transferred to Our Lady’s hospital for Sick Children in Dublin.
At 2am that night we got the life-changing news that Mia was born with a complex heart condition called Hypo Plastic Left Heart Syndrome. It is a rare congenital heart defect in which the left side of the heart is severely underdeveloped and without surgical intervention is fatal.
At just 21 days old, Mia endured her first of multiple life-saving open-heart surgeries. Just four months later, she had her second. These months were an extremely scary and difficult time - Mia was very, very sick and spent a number of weeks in Intensive Care Unit. Finally, after several months in hospital, Mia eventually got to go home.
First Stroke
Unfortunately, as a result of Mia’s weak heart, she suffered a stroke at the age of 2 leaving her left side paralised. Through Mia’s hard work and resilience, she regained a great deal of function in her arm and leg. We wonderfully got to see Mia begin play school and, in 2011, a Primary School.
Happy days
Life was almost normal for a time - Mia was growing up and enjoying her childhood. She was incredibly strong.
Despite her purple lips, occasional breathlessness, her weak left side and her inability to walk or run for long she had fun, made friends and made all of our lives brighter. She was growing up happy and full of charm. We couldn’t have been happier to see Mia smiling and doing well in the school despite all the limitations she needed to overcome daily.
Long wait
Unfortunately, at one of Mia’s check-ups the blood results indicated that her heart was getting weaker and at the age of 7 Mia was assessed in Great Ormond Street Hospital in London for a heart transplant and consequently was put on a waiting list in April of 2013 – it was a high-risk procedure for Mia due to her existing heart condition.
For the next four and a half years we lived in two parallel worlds – one, where we tried to keep things as normal as could be, going to work and school and the other in a state of constant anxiety and anticipation, one hand on the phone at all times. There was a lot of fear, but there was also a lot of hope that with a new heart Mia would finally be able to experience all the things she missed out on - running, going for long walks, sports.
Transplant
On the 14th of October 2017 we finally got the call and were transferred by helicopter from Shannon Airport to London. At 3am on the 15th of October, through the tremendous kindness of donor’s family, Mia went for her 3rd and biggest open-heart surgery - a heart transplant.
After 7 long hours of surgery, Mia was transferred into an Intensive Care Unit.
The doctors were initially happy with the outcome, as were we - the waiting was finally over. However, the next few days brought difficulties and just 2 weeks later Mia had to undergo a corrective operation - her 4th open-heart surgery.
Second stroke
Even this was not the end of Mia’s struggles and just four days later she suffered another bleed in her brain which required an urgent brain surgery. This stroke left Mia with a right hemiparesis.
The following days were dark, difficult and full of uncertainty and hourly changes from good to bad. Mia was on life support, extremely weak and had no movement in her right side.
Fighting back
Mia fought back. Slowly, things started to improve bit by bit - Mia’s smile, her strong spirit and determination were slowly coming back. The whole family was in London – her big sister by her side with Mom and Dad taking turns.
All the people
We were surrounded by wonderful people - from the medical teams at Great Ormond Street and Our Lady’s Hospital in Dublin, to colleagues at Intel corporation and neighbors in Clare and Limerick. Together we got to see Mia slowly improving: getting off the breathing machine, sitting on her own for a few minutes for the first time in months and eventually coming home the day after her 12th birthday on the 12th of April 2018. Despite the knowledge that she would need yet another surgery when she got stronger, it was an extremely happy and big day.
Final Surgery and Journey ahead
Mia had her 5th open-heart surgery in September 2018. In January of 2019 she underwent a tracheostomy closure and a Hickman line removal.
Being home is good but there is no rest - we have a whole new journey ahead of us. Mia has to fight the effects of a stroke and work hard to re-gain the ability to walk, talk and get the function in her right arm back. She is working hard to get her independence back.
Rehabilitation
While Mia continues to get better, she is in a desperate need of an intensive rehabilitation program that would give her a chance to make significant improvements.
There are only a few centers in Europe that specialize in neuro-rehabilitation and accept children; A neuro rehabilitation clinic in Croatia have offered us a robotics assisted program (Lokomat, Armeo, Amadeo, Pablo and many more), that leverages the latest research advancements concerning neuroplasticity and high-repetition robotics support with 5-6 hours of therapy a day, 6 days a week.
Mia continues to inspire us every day with her willingness to get better: recovery is tough, but we hope, with the right specialist support and a ton of courage and determination, is possible.
THANK YOU VERY MUCH FOR YOUR SUPPORT!
Mia has fought her way through life with every breath in her body since day 1.
Being born with a complex heart condition, she had two open heart surgeries as a baby and was put on a heart transplant list at age of 7.
After a long wait of over four years, Mia had her heart transplant in October 2017 but things didn’t go as well as we hoped: Mia had to fight her way back through 6 months in ICU on life-support, two more open heart surgeries (bringing the total to five), a bleed in her brain followed by an emergency brain surgery. As a result, Mia has been left battling paralysis in her right side.
All Mia dreams of is to go back to school on her own and to play ukulele again.
She is fighting the effects of stroke with every fiber of her being, and has made progress, but she needs help.
We made a contact with Rehabilitation Centre pioneering the use of robotics in children and young adolescent rehabilitation with outstanding results.
We are trying to collect the funds to help us start Mia’s rehabilitation in the summer of 2021.
The cost of a six-month program is 40,000 Euros. This excludes travel and accommodation expenses.
Thank you for your support!
Mia’s full story is below.
Diagnosis
Mia was born on April 11th, 2006 and came home 5 days later.
Things seemed calm and normal until the 20th of April when Mia suddenly collapsed - we knew very little about what was happening when a nurse grabbed her from us and rushed her into a resuscitation room. Throughout the next three, long hours, doctors fought to stabilize her. Mia was then transferred to Our Lady’s hospital for Sick Children in Dublin.
At 2am that night we got the life-changing news that Mia was born with a complex heart condition called Hypo Plastic Left Heart Syndrome. It is a rare congenital heart defect in which the left side of the heart is severely underdeveloped and without surgical intervention is fatal.
At just 21 days old, Mia endured her first of multiple life-saving open-heart surgeries. Just four months later, she had her second. These months were an extremely scary and difficult time - Mia was very, very sick and spent a number of weeks in Intensive Care Unit. Finally, after several months in hospital, Mia eventually got to go home.
First Stroke
Unfortunately, as a result of Mia’s weak heart, she suffered a stroke at the age of 2 leaving her left side paralised. Through Mia’s hard work and resilience, she regained a great deal of function in her arm and leg. We wonderfully got to see Mia begin play school and, in 2011, a Primary School.
Happy days
Life was almost normal for a time - Mia was growing up and enjoying her childhood. She was incredibly strong.
Despite her purple lips, occasional breathlessness, her weak left side and her inability to walk or run for long she had fun, made friends and made all of our lives brighter. She was growing up happy and full of charm. We couldn’t have been happier to see Mia smiling and doing well in the school despite all the limitations she needed to overcome daily.
Long wait
Unfortunately, at one of Mia’s check-ups the blood results indicated that her heart was getting weaker and at the age of 7 Mia was assessed in Great Ormond Street Hospital in London for a heart transplant and consequently was put on a waiting list in April of 2013 – it was a high-risk procedure for Mia due to her existing heart condition.
For the next four and a half years we lived in two parallel worlds – one, where we tried to keep things as normal as could be, going to work and school and the other in a state of constant anxiety and anticipation, one hand on the phone at all times. There was a lot of fear, but there was also a lot of hope that with a new heart Mia would finally be able to experience all the things she missed out on - running, going for long walks, sports.
Transplant
On the 14th of October 2017 we finally got the call and were transferred by helicopter from Shannon Airport to London. At 3am on the 15th of October, through the tremendous kindness of donor’s family, Mia went for her 3rd and biggest open-heart surgery - a heart transplant.
After 7 long hours of surgery, Mia was transferred into an Intensive Care Unit.
The doctors were initially happy with the outcome, as were we - the waiting was finally over. However, the next few days brought difficulties and just 2 weeks later Mia had to undergo a corrective operation - her 4th open-heart surgery.
Second stroke
Even this was not the end of Mia’s struggles and just four days later she suffered another bleed in her brain which required an urgent brain surgery. This stroke left Mia with a right hemiparesis.
The following days were dark, difficult and full of uncertainty and hourly changes from good to bad. Mia was on life support, extremely weak and had no movement in her right side.
Fighting back
Mia fought back. Slowly, things started to improve bit by bit - Mia’s smile, her strong spirit and determination were slowly coming back. The whole family was in London – her big sister by her side with Mom and Dad taking turns.
All the people
We were surrounded by wonderful people - from the medical teams at Great Ormond Street and Our Lady’s Hospital in Dublin, to colleagues at Intel corporation and neighbors in Clare and Limerick. Together we got to see Mia slowly improving: getting off the breathing machine, sitting on her own for a few minutes for the first time in months and eventually coming home the day after her 12th birthday on the 12th of April 2018. Despite the knowledge that she would need yet another surgery when she got stronger, it was an extremely happy and big day.
Final Surgery and Journey ahead
Mia had her 5th open-heart surgery in September 2018. In January of 2019 she underwent a tracheostomy closure and a Hickman line removal.
Being home is good but there is no rest - we have a whole new journey ahead of us. Mia has to fight the effects of a stroke and work hard to re-gain the ability to walk, talk and get the function in her right arm back. She is working hard to get her independence back.
Rehabilitation
While Mia continues to get better, she is in a desperate need of an intensive rehabilitation program that would give her a chance to make significant improvements.
There are only a few centers in Europe that specialize in neuro-rehabilitation and accept children; A neuro rehabilitation clinic in Croatia have offered us a robotics assisted program (Lokomat, Armeo, Amadeo, Pablo and many more), that leverages the latest research advancements concerning neuroplasticity and high-repetition robotics support with 5-6 hours of therapy a day, 6 days a week.
Mia continues to inspire us every day with her willingness to get better: recovery is tough, but we hope, with the right specialist support and a ton of courage and determination, is possible.
THANK YOU VERY MUCH FOR YOUR SUPPORT!
Organizer
Sasha Radojicic
Organizer