Gene-Therapy Trial for Kat Lewis
Donation protected
If you've ever attended a music festival in the United States, chances are good that you've seen my best friend, Kat, stage managing.
She is an amazing person and friend who is both private and humble. This campaign and her story are not something she wanted to make public, but I insisted. Kat is always helping others, especially musicians, and right now she needs OUR help.
Here is the story: Kat was amazing at her job and she loved it. Unfortunately, (after much resistance), she finally had to give it up last year. Kat was diagnosed with an extremely rare degenerative bone disease called X-linked Hypophosphatemic Rickets (XLH, for short) just after her second birthday. Her situation isn't genetic so the likelihood of her getting "this shit" (her words) was 1/200,000,000 live births.
The gist of XLH is that her body cannot process Vitamin D, leaving her bones brittle and broken without hope of healing, and it is excruciatingly painful. Kat was forced to give up the career she loved so much, and one that financially supported her, due to the inescapable pain her disease caused and how easily she breaks major bones. Can you even imagine that?
On a positive note, last Tuesday Kat was chosen to begin a gene-therapy trial for a wonder drug that just might allow her to lead a normal life in as little as two years! We're talking out of pain and off of pain medications, and with bones that will finally heal and also not break in the first damn place (her words, girl has a great sense of humor), and a chance to get back to a regular life.
Here's the catch: each shot of Crysvita, the gene-editing drug, (received each month), costs $18k. She has a grant that covers the $18k but she's got another $3700 that she's responsible for a four times per year. This drug is a life changer and all of those that love her want to make this happen. Kat is also financially recovering from expenses involved with recently moving from Chicago to Connecticut to be closer to Yale in order to be considered for this gene-therapy trial.
That being said, I know times are tough but anything you can offer helps. Has she given you or your band free advice/help? Has she booked you on an amazing bill? Has she worked with your band at a festival and you had a great time? Do you know her, Maggie (the dog), and Snacks (the cat) personally? Chances are you answered yes to one of these questions and now it is time to give back. Let's make this happen for a very deserving person!
Thank you all.
She is an amazing person and friend who is both private and humble. This campaign and her story are not something she wanted to make public, but I insisted. Kat is always helping others, especially musicians, and right now she needs OUR help.
Here is the story: Kat was amazing at her job and she loved it. Unfortunately, (after much resistance), she finally had to give it up last year. Kat was diagnosed with an extremely rare degenerative bone disease called X-linked Hypophosphatemic Rickets (XLH, for short) just after her second birthday. Her situation isn't genetic so the likelihood of her getting "this shit" (her words) was 1/200,000,000 live births.
The gist of XLH is that her body cannot process Vitamin D, leaving her bones brittle and broken without hope of healing, and it is excruciatingly painful. Kat was forced to give up the career she loved so much, and one that financially supported her, due to the inescapable pain her disease caused and how easily she breaks major bones. Can you even imagine that?
On a positive note, last Tuesday Kat was chosen to begin a gene-therapy trial for a wonder drug that just might allow her to lead a normal life in as little as two years! We're talking out of pain and off of pain medications, and with bones that will finally heal and also not break in the first damn place (her words, girl has a great sense of humor), and a chance to get back to a regular life.
Here's the catch: each shot of Crysvita, the gene-editing drug, (received each month), costs $18k. She has a grant that covers the $18k but she's got another $3700 that she's responsible for a four times per year. This drug is a life changer and all of those that love her want to make this happen. Kat is also financially recovering from expenses involved with recently moving from Chicago to Connecticut to be closer to Yale in order to be considered for this gene-therapy trial.
That being said, I know times are tough but anything you can offer helps. Has she given you or your band free advice/help? Has she booked you on an amazing bill? Has she worked with your band at a festival and you had a great time? Do you know her, Maggie (the dog), and Snacks (the cat) personally? Chances are you answered yes to one of these questions and now it is time to give back. Let's make this happen for a very deserving person!
Thank you all.
Organizer and beneficiary
Rachel Raymond
Organizer
Chicago, IL
Maggie Lewis
Beneficiary
