Laila Needs Our Help

Hi, everyone, it's Josh. I know a lot of you are coming from the L.A Flights Family, and some of you are not; either way I want to thank everyone for taking the time to view this page. We're all here for a very sad, scary, and life changing reason. I met Laila a little over two years ago now in New York. We bonded over our love and fascination for planes, music, and our silly, sometimes ridiculous sense of humor. Laila is my family now, we love each other immeasurably and I cannot even imagine life without seeing her smile that lights up my very soul and seeing that energetic and adventurous and sweet spark of life she always has. It scares me like nothing else that if she isn't treated, that may be lost forever. Even thinking about that possibility while writing this is making me cry. I hope you can see how desperate we both are feeling. Luckily Laila is the strongest person I have ever met with an incredible will for life and happiness.

I will say Laila is probably the most stubborn person I have ever known, but I mean that in a good way. She already overcame severe injuries to her back, spine, hips, legs, and left wrist when a hospital negligently allowed her to fall 7 years ago. It took her 5 years and a lot of surgeries to walk again, and I joke that she is the bionic woman because of all the titanium screws in her spine after that. You would think her medical adventures were over, but unfortunately that is not so. In May, she underwent a routine procedure that resulted in the rare, 1 in a million side effect of triggering a host of autoimmune issues as well as widespread neuropathy. In the course of getting these rare conditions treated by a practitioner in Seattle, she was prescribed milk thistle, which she is horribly allergic to. She had never reacted to it before but this time it landed her in the ER. The milk thistle allergy apparently triggered an allergy to sunflower products (interestingly, milk thistle and sunflower are related to one another, being a part of the Asteraceae family), and over the last month she has gone into anaphylactic shock three times due to these new allergies.

Happily we figured out what these allergies are (very rare ones!!), but when she was last admitted to the hospital for anaphylaxis, the doctor there gave her two medications that clearly should not have been prescribed together; there is an FDA black box warning against combining them. Laila has had a particularly severe reaction to this combination; within hours of taking the medications together, she experienced severe widespread pain and heart palpitations that were very strong and terrifying. This pain has continued unabated and has expanded to include widespread neuropathy and the increasing inability to walk. It hurts her so much to walk that we are saving up for a wheelchair for her. Even standing for a few seconds is extremely painful for her. All of these reactions were made worse by her hypothyroidism and by a genetic mutation she has that makes her body very poor at getting rid of toxins.

What this medication combination has started is severe collagen disruption, mitochondrial dysfunction, and metabolic dysfunction. There is very real and very serious risk of aortic aneurysm, aortic dissection, tendon rupture, and retinal detachment. We have been told that any of these things could happen randomly even while she is just sitting quietly. We have found two doctors in the entire country who treat this damage, and one of them told her that if she even so much as steps the wrong way, she will "blow out a tendon." He advised her to stay in bed immobile for the next few months at least. (This is difficult for her because if she stays still too much, it makes where the screws in her back are hurt a lot.) This is obviously terrifying. As of now she spends her days stuck in bed. This is all very hard for someone who was active and curious about the world but can no longer partake in her beloved hobbies because she is physically unable to and is in too much pain to really concentrate for very long. As a testament to her will to still laugh and be her typical funny self she says she can still spring forth with a pun for just about every occasion, though. :)

The doctor that appears best equipped to treat her is all the way in Minnesota. She asked him if he would work with us on a monthly payment plan but was told unequivocally NO, he NEEDS a payment of approximately $35,000 up front (whatever money that may be left over will be used for travel expenses, necessary supplements, and even a wheelchair if possible). I can understand that, he spent years in medical school and knows what he is doing. His time and expertise are valuable. But the reality is, we simply do not have the means to come up with this type of lump sum in the foreseeable future. At this point reaching out to the community and the kindness of others is the last chance for Laila and her future.

All of this has been more difficult than I can describe. But I will say that Laila has a very positive attitude. She has taught me that each day matters, that you must celebrate the small victories as well as the large ones. She likes to say that a truly good day is a pearl beyond price. And she is of course upset and worried and in pain, but she still sees the good in life, the beauty in existence, the beauty in other people. For her, the simple things in life truly are the most beautiful; a cup of tea enjoyed with a beloved cat, the smile from someone you love lighting up their face. In the spirit of Desiderata, there is always beauty to behold. :) Sometimes you have to look really hard, but it's there!

We want to thank all of you who read this far. It means a lot that you took the time to read about Laila and what she is going through. I know sometimes it is not possible to donate, so thank you from the bottom of both of our hearts for your thoughts and prayers. <3 Love to all! The next few paragraphs will be dedicated to getting to know a little about Laila and the things that make her the special person I've had the pleasure of knowing and loving and adoring with my every cell.

Laila loves travel and hates staying in the same place too long. She has lived in 4 different states across both coasts and even in Europe for a while. She especially loved Washington state; she says she still misses the Olympics and the Cascades in equal measure and sends a warm Hi to Mt Rainier. ;)

She has earned 3 university degrees, including one in education and one in German from the University of Washington. Ever since I have known her she is always reading something, and I believe her when she says she has always been the definition of a bookworm. You would rightly interpret from her German degree that she adores language (she nearly joined the Air Force to become one of their linguists, but fate intervened - a long story!), and she was fluent in Spanish by age 18. Unfortunately she is no longer fluent but she and I are actively working to recapture that. :) Her German is somewhat better and she translated for Peter, Kevin, and me quite a lot in Germany! Through LAF, she has met so many amazing people and made wonderful friends who are a cherished part of her life. :) She is shy of appearing before the camera but she has been with us in Anchorage, Boston, New York, Los Angeles, and Frankfurt!

For Laila, the roar of plane engines during takeoff is the biggest thrill in the world! Her attitude has always been that there is another adventure just around the corner, and she knows some airports better than any of her hometowns. :) Like many of you reading, Laila absolutely loves planespotting and watching planes take off and land never, ever gets old for her. I love watching her watch planes, she is like a happy kid in a candy store. :) Her favorite plane ever is the 747-100 and her favorite airport is Reykjavik (KEF) because it brought her in touch with her inner Viking, so she says. Laila is one of the most well-traveled people I know, someone who truly loves seeing the world and learning about its richness and complexities for herself.

Almost all of you know that one of her greatest passions is baking and she is always spoiling me with her delicious baked goods. Sometimes she gets that thousand yard stare and I know the sound of the mixer is right around the corner. :) She is entirely self-taught when it comes to baking and she tells me she learned through trial and error. Laila's allergies mean she can no longer eat anything she bakes, but she keeps telling me that the true joy lies in baking per se, not necessarily in eating the creation. I do not concur but she insists this is so. ;) She is constantly creating her own original recipes and I am lucky enough to be the guinea pig! One day she hopes to publish a cookbook with mostly her own recipes. I cannot wait for her to get well enough to make that happen!

Those of you who have met her in the chat know she loves puns. She is always coming up with them and making me laugh. I have to say, it is an adventure to watch any show or movie with Laila, because she is constantly pausing it to go, "It's that guy from... [thinks a minute] that show 30 years ago with that other guy!" I have no idea how she does this, but it is entertaining. Random other things she loves doing are knitting shawls, scarves, and 30% of an afghan, and flower arranging. She loves playing with flowers and growing them when she has access to actual grass. ;)

I guess it goes without saying that she is wild about cats! "Cats are truly magical wee beasties," in her words. She has said many times that she is very lucky for having had such wonderful, amazing felines in her life, and she misses all of them each and every day. Like all of us cat lovers, she is swept away by their purring and ears and noses and their adorable whiskers. I think we all understand how she feels. :)

We thank you from the bottom of your hearts for taking the time to read this. Thank you again for any thoughts and prayers you may have for Laila. Many blessings to you and lots of love. <3