The Campaign for Cassie "Lights of Hope"

I needed a day off work to get down to the business of writing about the Campaign for Cassie across our community. Cassie has been working hard at her rehabillitation. She has attended Chedoke Developmental Rehabillitation Program for seven years. She was one of the youngest little babies at Chedoke and has excelled in every single program that the therapists have planned for her. This brings us to August 2008. Every 6 months we have gone to Chedoke to attend Dr. Sarah Burrows orthopedic clinic to check Cassie's progress. Year after year Dr. Burrow has seemed satisfied that Cassie's custom orthotics, her active physiotherapy plus all her extra curricular was keeping things looking good for Cassie's hemiplegic weak left side.
The last 2-3 visits I have sat patiently waiting for Dr. Burrows expertise. I think it has been the last three visits, I mentioned I am not happy with Cassie's foot. I am no expert I am a mother of two children and Cassie's twisted foot was bugging me and other people in her family. The many friends and family members that watched Cassie grow and kept asking us. "Can't they do more to help Cassie's foot". "It is slowing her down." "It looks worse, it looks twisted." "She cant walk well at the pool when her braces aren't on." " She can't climb the pool ladder anymore and is unbalanced when walking in the water." My mom pointed out she cant turn her hand up to pump soap on her hand. Her fingers are always tucked together under her thumb. She is neglecting to use her weak hand again.
These comments from people that love Cassie tended to play on my heart strings. As Cassie's mother I am always looking for ways to help her. I felt there was more that could be done. The therapist's at CDRP will tell you I am relentless.
I don't get much time at Dr. Burrow's orthopedic clinic to ask questions. We always feel it is rushed. She has lots of kids to see and the appointments are fast and the therapists and team do the talking. I felt like I should keep waiting until the doctors tell me there is more that can be done. I admit I have trouble waiting.
After the last orthopedic clinic visit, things started to roll with other options for Cassie. Yes she need orthopedic surgery but the timing of when is crucial and her muscle tone is a big problem. Yes there are other things that can be done. I started to hear about the use of Botox and Serial Casting. I was so happy to get referred to Dr. Bently/Dr. Gorter/Dr. Mesterman at Mcmaster children's hospital. These specialists advocated for Botox injections and serial casting to improve Cassie's hand function and walking abilities. My hopes were high only to be dashed down by the knowledge that these procedures are not covered by OHIP. They told me to advocate to Extended health benefits to pick up the cost. I had given up my extended health benefits when I changed jobs so to accomadate all Cassies appointments. I am a Registered Nurse. I could not believe these treatments would not be covered I instantly started worrying about paying for treatment. Immediately my husbands stress started to mount. I am relentless about finding Cassie's opportunities and Chris takes the financial burden of paying for what Cassie needs. We had recently paid before for dental surgery, custom ankle orthotics, parking fees at Mcmaster and Chedoke hospitals, special shoes, knee immobilzers and Contraint induced movement therapy but we felt tapped out and worried excessibly about the costs of these other treatment options.
My husband a mechanic for 17 years had just finished four years of Mohawk College's Mechanical Engineering Technology program. We were so far behind financially from Chris being a student for four years. We were so proud of Chris for obtaining a college diploma at the age of 44. We were so happy Chris landed a job right away as technical support for Espar a good company but we continued to try to dig our selves out of our financial hole. Working part time as a nurse, missing opportunities to make extra income related to relentless appointments was taking its toll on us both emotionally and physically.
Then August 8, 2008 changed my entire life. I get a telephone call Chris is at Mcmaster hospital he has had a stroke. I rush out of work. My heart racing. I was so scared. I was in denial they must have the wrong man. My husband 44 years old so healthy, so strong I didnt think he had a stroke. I arrived to my husband in a hospital bed at Mcmaster ER. He had right sided weakness, facial droop and had lost speach and looked very scared. We sat through various tests and prayed to God. By four o'clock in the afternoon while holding hands together Chris's symptoms started subsiding. The blood clot in the MCA artery was allowing bloodflow to move around the clot and Chris was talking without mumbling. His gorgeous smile came back and his hand numbness seemed to be settling down. I believe it was God watching out for Chris and good medical care by the team that made the difference. Fianancial worries were put aside again. The health of my husband was all I cared about.
After 9 weeks off work Chris was set back again financially. Stress was hindering his recovery and we were fighting. I took it upon myself to get vocal and emailed Mike Pearson a local news reporter about Cassie' situation. I was told Serial Casting would cost 200.00 per week for eight weeks. I got quotes and letters from specialist's outlining the costs. I found out Cassie needed extensive therapy after Botox injections. I got word of Ability Camp in Pickton Ontario and I wanted to provide Cassie with the opportunity for extra therapy. Mike Pearson headlined the story in the Ancaster News Front Page. Thanks Mike this helped kick off Cassie's campaign.
A local lifegaurd at Ancaster Aquatic centre Rob Ellison handed me $ 20.00 with a note saying get Cassie treatment. This random act of kindness allowed me to accept that people wanted to help and I could talk about our situation. It is very difficult to air ones own financial problems but it has empowered us to work on our own budget thus decreasing stress and communicating better.
I worried excessively about how the campaign would go and how people would respond. I can tell you that we have been overwhelmed with love and support. People wanted to hear about Cassie's situation and thus my blog started. In a short few months there has been financial assistance from our church St John's Evangelical Lutheran Church, Cassie's school: Fessenden Public Shool, Village tree house of Ancaster, Rotary Club of Ancaster, Anaster Aquatic Centre Lifeguards, SJH ER nurses as well as many, many friends, family members and people in our community.
The issue behind these treatments not being covered by OHIP is still controversial. Cassie's treatments should be payed for by OHIP. Brenda Stricker wrote to the community voices section of my local paper today. Families have alot to deal with when their child has special needs. Parents should not have to rely on a campaign. Brenda's note makes me realize I have a big job to do. I will continue to lobby and campaign our health minister and government to start paying for Botox and Serial Casting. I feel strong to start lobbying because I have the support of so many people.
Cassie has been given a wonderful opportunity to attend Ability Camp from Feb9 until March 13, 2009 to work on her therapy goals and improve her independence. My work approved an unpaid Leave of Absense. I will take time off work as my contribution to my daughter who I belieive can still make big gains in her goals for rehabilliation. I will miss pay checks for five weeks so Cassie gets extra extensive therapy at Ability camp. I make this contribution to my wonderful daughter because countless people in our community have reached into their own pocket books to donate to Cassie's campaing. Chris will contribute by holding down the fort at home, going to work and looking after Julia in order to maintain our home and house bills. Cassie is getting all the treatment available to her thanks to so many of you. Thank you from the bottom of our hearts.
Kathy and Chris Fruck
January 10, 2009