CAMERON's PANDAS FUND FOR FAMILIES
Where do we go from here? It’s time to help others.
We will be forever grateful to every single person that donated or raised every single penny & pound for Cameron, to afford us the opportunity to get him to Europe and the USA to the experts, we were so lucky to have had those opportunities! There are still dark days, Cameron continues to battle daily limitations from his brain injury and its likely he always will, however, he is back in school for a few hours a week, supported by an assistant and a home teacher, and he is doing well in his 3 subjects! He is now a young man emerging from the shadow of this illness, starting to find his way again and we are very thankful for that. He has brilliant friends and is able to enjoy a bit of life again. Slowly, family life for us is starting to return. His path will be very very different than the one he was on 4 years ago before the earthquake in his brain, but looking back, being angry, feeling robbed for him and grieving is not going to make him better, its only using up energy I need for living! So, he will make his way in life, and he will continue to make us proud, of that I have no doubt! He truly is an amazing individual.
For some time now I have been working away in the background setting up and putting together plans to develop our fund into a charity providing support for newly diagnosed families in Northern Ireland. It was always our plan that when we got Cameron to a more stable place and things levelled off for us as a family in such a way that we were able to start ‘doing life’ again, that as well as continuing to fight for Cameron, we would also start to support other families through the journey that we had been through. I feel very strongly that the living hell that was our life for the last 4 years should not have been in vain, that there has to be a positive legacy come out of the suffering.
There was nothing out there for us, no support for Annie, for Jonathan or I in coping with the nuclear bomb that had hit our family. Doctors and medical professionals involved with Cameron, due to lack of knowledge and understanding, have only been of limited support to Cameron. Knowledge is key with this disease!
Our initial plans have 5 main strands –
* to provide counselling support for families, the child, their siblings and parents, both individual and group.
* We would also plan to put together tailored presentations – for families (Inc. relatives & friends!) new to the condition, interested GP surgeries, medical practitioners, schools & educators. All KEY in a family’s journey.
*information Roadshows (I have previously talked about these). Awareness is severely lacking in the general population, and, we would hope, through roadshows in shopping centres & hospitals etc. that we can educate people on this illness, the signs and symptoms, and what a life changing difference it can make to the child’s prognosis to diagnose and treat EARLY & QUICKLY!! We were denied that and therefore Cameron and our family will forever bear the scars of treatment delay.
*one to one support & care. Hospital stays, house confinement for months as your child can’t leave or let you out of their sight (I couldn’t leave the house for over 6 months) can totally upend everyone in the family. So be it hospital care packages, help with shopping, laundry & cleaning, meals on wheels, sibling days out, whatever support we can practically offer families. I used to leave my laundry on my doorstep to be collected by a friend, who did it & left it back on the doorstep as we couldn’t open the door!
*Creating a respite haven for families or maybe just parents on their own at our beach cottage on Islandmagee Co.Antrim. We have done some work on this already but still need willing volunteers who can turn their hand to carpentry, building, painting and plumbing, and any merchants willing to make a donation of supplies and materials!
The fund will support not just pure PANDAS/PANS families but also those who have children are PANDAS + cases like Cameron, who developed Encephalitis. Children who have had their lives hit by brain encephalopathy due to infection or an immune triggered response, they and their families will all be welcome! There are so many cross-linked conditions involved and intertwined in PANDAS/PANS, there is no such thing as black and white with them!! We will help whoever we can!
So I’m really pleased to be able to tell you that ‘Cameron’s PANDAS Fund’ is now fundraising again! We have a few ideas for events – Zip line across the river Lagan! PANDAS does Strictly! Mr Lindsay running to all the Irish League grounds over a week (approx. 220 miles) & Mr Lindsay volunteering to have an ‘All Over’ wax!!!
If anyone has any ideas or would like to run an event, please contact me and we can provide you with pop-ups, information boards, t-shirts, flyers and collection buckets/tins.
We will be forever grateful to every single person that donated or raised every single penny & pound for Cameron, to afford us the opportunity to get him to Europe and the USA to the experts, we were so lucky to have had those opportunities! There are still dark days, Cameron continues to battle daily limitations from his brain injury and its likely he always will, however, he is back in school for a few hours a week, supported by an assistant and a home teacher, and he is doing well in his 3 subjects! He is now a young man emerging from the shadow of this illness, starting to find his way again and we are very thankful for that. He has brilliant friends and is able to enjoy a bit of life again. Slowly, family life for us is starting to return. His path will be very very different than the one he was on 4 years ago before the earthquake in his brain, but looking back, being angry, feeling robbed for him and grieving is not going to make him better, its only using up energy I need for living! So, he will make his way in life, and he will continue to make us proud, of that I have no doubt! He truly is an amazing individual.
For some time now I have been working away in the background setting up and putting together plans to develop our fund into a charity providing support for newly diagnosed families in Northern Ireland. It was always our plan that when we got Cameron to a more stable place and things levelled off for us as a family in such a way that we were able to start ‘doing life’ again, that as well as continuing to fight for Cameron, we would also start to support other families through the journey that we had been through. I feel very strongly that the living hell that was our life for the last 4 years should not have been in vain, that there has to be a positive legacy come out of the suffering.
There was nothing out there for us, no support for Annie, for Jonathan or I in coping with the nuclear bomb that had hit our family. Doctors and medical professionals involved with Cameron, due to lack of knowledge and understanding, have only been of limited support to Cameron. Knowledge is key with this disease!
Our initial plans have 5 main strands –
* to provide counselling support for families, the child, their siblings and parents, both individual and group.
* We would also plan to put together tailored presentations – for families (Inc. relatives & friends!) new to the condition, interested GP surgeries, medical practitioners, schools & educators. All KEY in a family’s journey.
*information Roadshows (I have previously talked about these). Awareness is severely lacking in the general population, and, we would hope, through roadshows in shopping centres & hospitals etc. that we can educate people on this illness, the signs and symptoms, and what a life changing difference it can make to the child’s prognosis to diagnose and treat EARLY & QUICKLY!! We were denied that and therefore Cameron and our family will forever bear the scars of treatment delay.
*one to one support & care. Hospital stays, house confinement for months as your child can’t leave or let you out of their sight (I couldn’t leave the house for over 6 months) can totally upend everyone in the family. So be it hospital care packages, help with shopping, laundry & cleaning, meals on wheels, sibling days out, whatever support we can practically offer families. I used to leave my laundry on my doorstep to be collected by a friend, who did it & left it back on the doorstep as we couldn’t open the door!
*Creating a respite haven for families or maybe just parents on their own at our beach cottage on Islandmagee Co.Antrim. We have done some work on this already but still need willing volunteers who can turn their hand to carpentry, building, painting and plumbing, and any merchants willing to make a donation of supplies and materials!
The fund will support not just pure PANDAS/PANS families but also those who have children are PANDAS + cases like Cameron, who developed Encephalitis. Children who have had their lives hit by brain encephalopathy due to infection or an immune triggered response, they and their families will all be welcome! There are so many cross-linked conditions involved and intertwined in PANDAS/PANS, there is no such thing as black and white with them!! We will help whoever we can!
So I’m really pleased to be able to tell you that ‘Cameron’s PANDAS Fund’ is now fundraising again! We have a few ideas for events – Zip line across the river Lagan! PANDAS does Strictly! Mr Lindsay running to all the Irish League grounds over a week (approx. 220 miles) & Mr Lindsay volunteering to have an ‘All Over’ wax!!!
If anyone has any ideas or would like to run an event, please contact me and we can provide you with pop-ups, information boards, t-shirts, flyers and collection buckets/tins.