I realize I haven’t blogged since the beginning of December, and with my first post of 2011, I’m asking for your help instead of updating. I promise I’ll post an update in a later post.
Asking for financial help, regardless of how much, is something I find difficult to do. As much as I wanted to do some sort of fundraising for V and I when we were in the thick of TTC, we didn’t. I felt that we should be able to figure this out ourselves. I guess my pride got in the way.
However, today I’ve put that pride away. I’m asking today for help for my brother in law, Michael, V's brother. Michael is 37 and is the father of two young boys, ages 3 and 6. I’m going to paste here the letter that his wife wrote and sent out to friends and family. I know how hard that must have been for her and I’m proud of her. She’s doing everything she can to help her husband, to save his life.
Dear Family and Friends,
As many of you may already know, I am actively involved in fundraising for my husband’s medical treatment of Rhabdomyolysis at the Mayo Clinic in Rochester, Minnesota, USA. I am contacting you on behalf of my husband Michael Assivero and family to request your support in the form of a financial donation toward his medical treatment.
What is Rhabdomyolysis and how did we get here?
For those of you who are not familiar with Rhabdomyolysis, it is a potentially life-threatening syndrome resulting from the breakdown of skeletal muscle fibers with leakage of muscle contents into the circulation. Approximately one third of adult patients with Rhabdomyolysis develop renal failure if not adequately treated. My husband has suffered severe effects tied to this disease for the past “7” years (2 or 3 major episodes a year). You can get a better grasp of Rhabdomyolisis on the following websites. Michael suffers from the non-trauma, infection related version.
At this time, the Ontario medical system has determined they are unable to cure the effects of this disease and are unable to identify next steps in his treatment. Through research we have identified that the Mayo Clinic in the US is willing to explore alternate treatments.
Michael has been seen by many doctors in Ottawa and as far as Barrie and London, ON regarding this issue over the past 7 years. After fighting (and thankfully winning the fight) with colon cancer in 2009 we noticed that his ability to battle back from an episode of rhabdomyolisis was decreasing and the pain was no longer going away in between hospital visits.
In September of 2010 he was hospitalized for 9 days. During this episode his creatine kinase (CK) levels reached 88,000 (the highest it has ever been – normal level for a male is under 400), and since then he has not fully recovered. The various specialists he has seen to this point have reached the end of their collective knowledge base and have taken to “treating” the episodes by admitting him to hospital, flushing his system with IV fluids, giving him painkillers and waiting for the CK levels to drop to a non life threatening level rather than looking for an overall cause and/or solution. Meanwhile, Michael is still in pain and continues to deal with the deteriorating effects of the disease.
The Mayo Clinic’s Patient Estimating Service has forecasted the following expenses for the initial visit;
- Testing - $15,000 USD
- Transportation/Accommodation - $ 2,000 USD
The initial visit is for testing and hopefully diagnosis. Once the testing is done, the Clinic would be in a better position to provide details on possible treatments and their associated costs.
While transportation costs for the initial visit have already been donated, I am sincerely asking for your help by contributing financially towards Michael’s medical treatment. Please understand that any donation amount will be welcomed. Funds raised in excess of what is needed for his treatment will be used to start an education campaign in Canada for doctors and the general public to hopefully stop anyone else from having to suffer needlessly in a similar situation.
I am not sure if I can put in to words how much this disease has affected our family. Michael puts on a brave face when he’s out and even fought through the pain to help at CHUO’s annual Christmas fundraiser. What most people haven’t seen is the 3 days it takes to recover from a day like that. Most people haven’t seen the tears in his eyes when he can’t hold Nathaniel in his arms for more than 30 seconds or not being able to play soccer with Matthew-Michael. There are days where he literally doesn’t get out of bed. I wouldn’t say he is anywhere close to giving up, but it really has taken its toll on him mentally and physically.
Michael is scheduled to visit the Mayo Clinic March 7, 2011, so if it is at all possible, please forward donations on or before February 20, 2011.
If you knew Michael, you know that he will have exhausted all his resources before asking for help. If you feel you can help, a bank account has been set up in his name. Please contact me directly and I will send you that information.
You can also donate online via Interac e-Transfer at participating banks utilizing my address.
Even if you feel you can't help financially, please keep Michael and his family in your thoughts and prayers that they are able to find a way to beat this.
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I'm sorry to hear the struggle your brother-in-law and sister are going through right now. I wish them the best.
Thank you. :)
I clicked over from LFCA and because I saw the word rhabdomyolysis. Rob Hogan, a farmer and very respected community member in my area developed this last fall (following a seemingly uneventful fall off a tractor) and, tragically, died from it, and complications, about 3 weeks later. His family has kept a very public website about their experiences and loss, here: http://www.caringbridge.org/visit/robandannhogan . Obviously the circumstances are different, but if it would be useful to your family to connect with someone who's dealt with this horrible condition within the US medical system, I would guess that a posting on that site (I don't think there is an email though there may be) would get a response and probably (just judging from how beautifully and articulately Rob's widow Ann writes) a helpful one.
Best wishes for your BIL and his family.
Thank you for your comment and the link. I will definitely pass this one.
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