Notes of Appreciation
The ILC has been a real gift to us in many ways. Firstly, the emotional relief in knowing that other families have had the same struggles, feelings and experiences has been the biggest help to us. We no longer felt alone in our struggles without a diagnosis for our children and with their physical hurdles (mountains sometimes). It has been such a pleasure to meet other families with similar struggles, socializing monthly has really helped us to know we are not alone.
The ILC put us in contact with a long list of specialists that are familiar with chronic pain and rare disorders. In fact, we now have the Canadian government’s permission to have genetic blood testing in the USA for certain connective tissue disorders that are suspected for our 11 year old son.
The school system, teachers and students didn’t know how to deal with our son’s symptoms and frequent long absences. The ILC sent in a young ambassador (someone with similar struggles) and a governing member of the ILC to do a classroom presentation and discussion of chronic pain. This helped the teaching staff be more understanding with our son and decreased the bullying instantly. A plan was then put in place with the school team and ILC to help my son get to school more often and how to cope with the pain at school so he could be there more.
We could not have gotten through this last year with out the information, referral tips, visits to our school and phone calls to the principal and the emotional support of all the other parents at the ILC. Special thanks to Sandy Smeenk for having such a patient ear from distraught parents. Without ILC we would still be struggling alone instead of feeling hopeful and managing in our life.
The Coffey family
I waited 30 years in Canada to be diagnosed correctly, and in the meantime had misdiagnoses and was prescribed antidepressants, which I strongly refused. I think my experience as an adult with a very strong personality facing workplace challenges, having to resign for health reasons, without a pension for 3 years until age 60 is quite different than that of the vulnerable children and teens. They have experienced similar problems as the adults being in pain and dealing with the health care system. But, they have faced these problems during a period when they are struggling with school, learning to socialize with peers, figure out who they are and what life is all about, scared about future, and in constant pain, when they should be playing, camping, dancing, dating, graduating, and making future plans. This is a very difficult and frightening period for them, especially when they are accused of being lazy, losers, failures, complainers, faking, refusing to go to school, etc.
As you know, a huge contributor to our struggle is the feeling of hopelessness, and the feelings that come along with being lost and falling to the medical wayside. I try to shy away from platitudes, but ILC is like true north for our medical compass.
I’m excited, geared up, and hopeful!
I still have all my goals, and know I can achieve them (and luckily there are people like you out there that make that process much smoother and easier), I don’t know, I just can’t shake this weird feeling that something bad’s going to happen. Maybe its just anxiety from the stress of being chronically ill… who knows!
I appreciate your message; it means a lot that you care, and that you’re out there making sure that we all stay positive – it is too easy to just get down, and stay down… and we need more people to show us the glass is half full!
Hi again Sandy,
I just wanted to say THANK YOU!!!!!!… I jut got off the phone with my sister (Kim). She called me to tell me all about the conversations she has been having with you! You have ignited a fire in her I have not heard in her voice in a long, long time. I know you can’t offer miracles but there is a lot to be said for hope… and hope is what you have brought to the table.
Thank you so much!
Thanks so much. Your support and devotion to helping our kids, is so very much appreciated.
Thank you again for the wonderful package you sent Isabel. What a brilliant idea it is. I know that Isabel certainly felt less alone in her struggle, especially after reading the handwritten notes from the other children. It really it such a treasure to her. We can’t thank you enough for your generosity.
Isabel would very much like to write encouraging notes to the other children who have EDS or other chronic pain conditions. Is there an address where we should mail these?
Thanks again for all the support you and the ILC have provided to Isabel and us. We’re so thankful that we’ve made contact with you. Please let us know where we can send Isabel’s notes of encouragement and support to other children who have chronic pain. We’d very much like to pay it forward.
Thanks again for all your hard work and your help with Charlie.
We need any help that you and the ILC can provide – Charlie is suffering a great deal both physically and mentally, and his illness is taking an enormous toll on my mother’s health as well. At this point, the ILC is the only hope we have, as it seems the medical community here has given up on Charlie and my whole family.
Thank you so much for your continued love and support – I don’t know where we’d be with you all.