RILEY LINDBERG SUPPORT FUND:
November 2012
November 2012
Letter from Audrey and Karen, Fall 2010Hello All,We have had a number of requests for an update on the fund for Riley, which you have all been so generously supporting since we established it in late 2010.Current status
When we spoke with Christine and Terry early this summer, they requested a delay in sending a fund update. They remain understandably reluctant to burden family and friends with the details of treatment costs.At this point, however, many of Terry and Christine’s personal resources have been depleted by the costs of care, despite help from the fund and Christine’s ability to source medication and medical supplies at bargain rates. Monthly costs continue at a cruel pace, and will continue to do so over the next months.For the first time, the money in the fund has dropped well below what we usually contribute monthly, with less than $4,000 available for upcoming costs.Ongoing costs
Riley remains under the care of his doctors in California, with most costs still falling outside of what Alberta Health Care will support. Thankfully, Home Care Respite and weekly nurse visits are now being covered by the province. To date, the fund has supported approximately $6,000 per month in care costs.As an additional need, Riley’s care team in California is recommending a visit to an adjunct clinic that is having some success with especially tough Lyme cases. This treatment would cost about $3500 per week, for an initial four-week course of treatment for Riley.Points of Hope
All of us who have walked alongside the Lindberg family for the past two years are finding this journey long, and the gains in health frustratingly small. Riley’s doctors comment that he remains a particularly difficult and frustrating case. His facial muscles remain frozen, sensitivity to touch extreme, emotional responses unpredictable, and pain constant. However, if we consider the early days, improvements are quietly evident. Riley is now:· using an IPad to communicate with Christine, Terry and Evan…as well as watch movies and read online magazines,· manipulating the remote to be able to watch TV with greater ease,· listening to music occasionally,· walking small distances each day with the aid of a walker.Moments of hope also come from the improvements of other Lyme patients in Western Canada, many of them originally also very ill. Christa in Vernon, for example, endured severe symptoms for several years, and is now living fully again. Her parents Cory and Mark Wensley (friends of the Lindbergs) comment:Endless months, seasons and years of our daughter's horrifying battle with Lyme disease seem surreal to us now. Hope wavered and dimmed as the unrelenting pain, seizures, comas, night sweats controlled every moment of Christa's life…for over 4 years! Thankfully, we never gave up on treatments…even though we saw so little change and the financial toll was enormous.Today, Christa is restored to almost complete health. As she travels Europe with her husband we are so thankful to those who stood by our family until the end.Where do we go from here?
Our past and continued contributions have been beyond helpful. With an eye to upcoming costs, Karen and I have spoken with Christine to get a sense of where we might continue to help through the fund. Examples of specific needs that our donations could support include· $100 for a physio or neurofeedback session (Riley has 3 sessions per week)· $250 to cover one week of IV bags, tubing, and related medical supplies· $750/month for phone consultations with doctors in California· $31.50/day for IV medications that target the Lyme and co-infections (cost after portion paid by health plan)· $3500 for a week of treatment at the adjunct clinic· Hotel costs while Riley is in treatment.Thank you all again for your continued support of Riley and his family through this fund. If you have further questions, please contact either Karen or me at the contacts below. As before, we have attached a separate document describing how and where to contribute to the fund.Warmest regards,Audrey and KarenPlease feel free to forward this message to friends or family you think would like to have this update, or who may be interested to donate.I can also be reached for any questions you may have about the Charitable Foundation of the Family or the Riley Lindberg Fund.Sincerely,Dale KoellerCharitable Foundation of the FamilyOffice: 403.278.0249 Fax: 403.225.0549Toll Free: 1.888.752.4642130, 4029 8 Street SECalgary, AB T2G 3A5For More Information: www.familycharity.ca
As many of you know....a small group of friends have taken it upon themselves to organize a fund to help cover the very costly “out of pocket” expenses for Riley’s medical treatment both here in Calgary and in California
Some have requested that the fund information be posted on the blog. So here it is….below is the initial invitation sent out from our friends regarding how to participate in the fund:
“As you know, the Lindbergs have been so grateful for the support they have received fromfriends and family during the past months. However, there is increasing concern about the
growing financial burden of Riley’s care...we are all aware that out-of-country care is expensive.
Although receiving support regarding treatment from one doctor here in
Including IV and oral medications, IV supplies, private IV nursing and homecare support, medical appointments and upcoming travel and treatment costs in California...they have paying approximately $6000-7000/per month.
The Charitable Foundation for the Family has set up the Riley Lindberg Support Fund, allowing individuals to contribute to the considerable financial costs of Riley’s care.
In a nutshell, it’s a way for you to make a contribution to help Riley and receive a charitable donation tax receipt in return. It’s also a way to give anonymously, if you prefer. We thought this was a very cool idea and Terry and Christine agreed to let us set this up, as long as it was clear that this was our bright idea, not theirs.
Below you can see the information regarding the Support Fund and how to be in touch with the Foundation if you are interested in participating.”
Warm regards,
Karen Hammond Phone: 403-249-9860 Email: hammond.associates@shaw.ca Audrey Habke Phone: 403-249 –7972 Email: ahabke@googlemail.com
Response – if you would like to assist the family
The Charitable Foundation for the Family (CFF) has established the Riley Lindberg Support Fund (“Lyme Aid” was our second choice ☺). Here’s how it works:
1. You send a cheque, made out to the Charitable Foundation for the Family, to:
130, 4029 8th Street
2. CFF will distribute all collected funds to pay for the Lindberg’s expenses monthly, in
response to receipted costs. CFF will send you a charitable tax donation receipt.
3. If any funds remain at the end of Riley’s treatment, CFF will send them onto
The Canadian Lyme Foundation ( http://www.canlyme.com/).
It’s that simple. With your help, we can support Riley and his family as they struggle with this devastating illness.
Thank you for your kind consideration and help.
The Riley Lindberg Support Fund team and the Charitable Foundation of the Family
