Quick background for you: Lisa and I were friends in middle school and in high school. We lived very close to each other so we often walked to school together, and she was as kind and beautiful then as she is today. As high school friends do, we lost touch completely until a little site called Facebook reconnected us in 2008. Lisa did not immediately disclose what she was going through with her daughter. In fact, she was more concerned about a family tragedy in my life at that time. When she finally did open up about Mac and her disease, and what they had just then started to endure, I was, to coin a Brit term, gobsmacked. Over these 6 years – let me repeat that, SIX years – I have read updates and CaringBridge entries that have numbed me. To tell Lisa that I was thinking of them, praying for them, seemed so insignificant. I still cannot wrap my mind around how they have fought this every single day for 6 years.
So I need to help them. This is Mac’s story. Please help me help them.
Mac was diagnosed with an exceedingly rare disease called Sclerosing Mesenteritis. To call it rare is a gross understatement. Since 1924, there have only been 17 cases reported in children. Mac is #15 on the case list. One of Mac’s many doctors explained the disease in layman’s term: “it's like someone opened up her belly, dumped a bag of dry cement in there, and sewed her back up." There is no known cause for SM, and Mac has had a very aggressive form of this since Day 1.
Mac has been fighting for her life since she was 14 years old. She is a vibrant, creative girl who wanted one day to work in the fashion industry, and this is how Mac spent her teen years: She has had no less than17 abdominal surgeries, multiple bowel obstructions, and now has 2 electrodes in her vertebrae and a generator in her lower back attached to her bladder so that she can urinate. After long rounds of chemo and steroids, she developed hydrocephalus (high fluid) on her brain. She has had 17 spinal taps in 10 months to drain this fluid from her head. She now has 2 stents placed in her head which open up ventricles as she has developed complete vascular insufficiency. Mac is frequently inpatient at the hospital and when she does make it home, she has in home nursing care. Nausea, vomiting and severe, sometimes unbearable abdominal pain are part of her daily life. She is TPN dependent and has been fed intravenously since January of this year. Because severe malnutrition is part and parcel to this nasty disease, she now weighs under 100 lbs.
Lisa has been told multiple times to prepare for the end. In 2009, the doctors gave Mac 2 months to live. Mac wrote a goodbye letter to her mom that Lisa carries with her every single day because... Mac is still here. Somehow, she and Mac continued to fight through the pain, the hospitals, the crushing costs of medical care, and by some miracle, Mac is still here. However, (and no matter how much I want to un-hear this, I cannot and it haunts me) – Lisa has told me that they are running out of options. There is not much more that can be done for Mac. My friend is telling me that her daughter might die soon, and my heart and mind are broken.
There is an experimental drug that may, it just may, give Mac a fighting chance for a few more years. A few more years is a lifetime to them, and who knows what cures and treatments might be open to them at that point? Because Lisa doesn’t stop fighting, has never stopped fighting, she has managed to get this drug approved for Mac. It is a long shot, but it is the best one that they have. The crappy truth, however, is that this is going to be yet another massive financial strain on Lisa.
Here is what Lisa never, EVER mentions to anyone. She is financially drained. There is so much that could be said about her fight to get Mac’s coverage extended and sufficient …. Trying to move her from a child to an adult in the world of insurance maximums is a monumental undertaking, and while she has managed to keep Mac covered most of the time, there are literally half a million dollars in expenses hanging over her head as a result of a 2 year period where Mac was refused coverage. As a working and single mom, she has split her time between trying to get to work when she can and being with Mac at the hospital. She has sold almost everything she is able to sell and has even decided to rent out some of her house to bring in additional funds.
The question here is this: when do you let money stand in the way of giving your child a chance to live?
The answer is clear: never. NEVER.
I have no words to tell you how reluctant Lisa and especially Mac were to give me permission to create this page. Would any of us want this very private and painful experience out there for the world to see? We would not. But in my heart, I know how many people there are who want to help. We really want to do something for this mom who will not give up, for this girl who has already been through so much. Now we can.
I am asking you to help. Please. No amount is too small and everything is so very appreciated. Lisa and Mac at least deserve to go through this new treatment without worrying about money. Let’s do this for them and make a real difference in their lives. Let’s make sure that money is NEVER a factor in this fight.
Thank you. From the bottom of my heart and with every ounce of my being, I thank you.
- Mark Morawa
- Mark Morawa
- Heather rich
- Heather rich
- Heather rich
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