Charlie's struggle
Donation protected
Hello to whoever this might reach,
Our names are Liz and Nicky and we have a beautiful daughter named Charlie Josephine. When she was born nothing seemed out of the ordinary but soon after we realized something about Charlie seemed different.
Our beautiful daughter did not reach her milestones, when other kids her age started crawling and getting up to walk, she was still trying her best to learn how to sit up straight. Her little body needed way more effort to move, she became frustrated and it became more and more clear that something was not right. Later the seizures came in and we knew we needed to get her help as soon as possible.
After months of fighting to get her diagnosed we found out she is suffering from a rare genetic disorder called SCN2A, causing developmental delay, autism and epilepsy. The first ever confirmed case in Belgium, where we are currently living. Her being the first case means there is no help, no research, we are left to fight on our own.
Feeling helpless, we turned to the internet where we found a loving community of parents and children living in the United States of America. SCN2A community , we talked for hours, days, with members of the community and finally felt like we were going somewhere. Due to amazing people putting their hands together we were able to raise enough money to get a first round of research done on our daughter Charlie. We traveled to Seattle, attended the SCN2A conference and got to talk with a lot of doctors who are researching this condition.
Since being back in Belgium, we are currently drowning in medical bills. We have no help, we have no hope of further research or possibilities for our daughter unless we travel back to the United States of America. Her condition is not being recognized by Belgian authorities, so we have no funding or financial aid to get her equipment or the research she needs.
What we intend to do with any donations:
- cover travel costs to the United States of America ( CHOP Philadelphia )
- cover medical bills
- cover special needs equipment ( adultsized diapers, special bike, special car seat,...)
- donate towards SCN2A research
We feel greatful that there is a platform where we can reach out for help, even if it breaks our hearts not being able to afford the help she needs by ourselves.
We would like to thank you for your time, effort and help. This means the world to Charlie and us as parents.
- Liz, Nicky and Charlie
Our names are Liz and Nicky and we have a beautiful daughter named Charlie Josephine. When she was born nothing seemed out of the ordinary but soon after we realized something about Charlie seemed different.
Our beautiful daughter did not reach her milestones, when other kids her age started crawling and getting up to walk, she was still trying her best to learn how to sit up straight. Her little body needed way more effort to move, she became frustrated and it became more and more clear that something was not right. Later the seizures came in and we knew we needed to get her help as soon as possible.
After months of fighting to get her diagnosed we found out she is suffering from a rare genetic disorder called SCN2A, causing developmental delay, autism and epilepsy. The first ever confirmed case in Belgium, where we are currently living. Her being the first case means there is no help, no research, we are left to fight on our own.
Feeling helpless, we turned to the internet where we found a loving community of parents and children living in the United States of America. SCN2A community , we talked for hours, days, with members of the community and finally felt like we were going somewhere. Due to amazing people putting their hands together we were able to raise enough money to get a first round of research done on our daughter Charlie. We traveled to Seattle, attended the SCN2A conference and got to talk with a lot of doctors who are researching this condition.
Since being back in Belgium, we are currently drowning in medical bills. We have no help, we have no hope of further research or possibilities for our daughter unless we travel back to the United States of America. Her condition is not being recognized by Belgian authorities, so we have no funding or financial aid to get her equipment or the research she needs.
What we intend to do with any donations:
- cover travel costs to the United States of America ( CHOP Philadelphia )
- cover medical bills
- cover special needs equipment ( adultsized diapers, special bike, special car seat,...)
- donate towards SCN2A research
We feel greatful that there is a platform where we can reach out for help, even if it breaks our hearts not being able to afford the help she needs by ourselves.
We would like to thank you for your time, effort and help. This means the world to Charlie and us as parents.
- Liz, Nicky and Charlie
Organizer
Nicky Boelen
Organizer
Beringen, VLG