Help Willow beat Anorexia!

 

 

 

 

Dear family, friends, and greater community,

Our beloved daughter/granddaughter/niece/cousin, Willow, has been diagnosed with an eating disorder. She is at a critical and dangerous juncture and needs Inpatient/Residential treatment now! (The following information was added/updated Sept. 22) She was originally diagnosed with ARFID, but since she has been admitted to a treatment program and assessed by professionals that specialize in eating disorders and her diagnosis has been officially changed to Anorexia Nervosa. What this means for treatment initially is essentially the same—weight restoration and stabilizing her overall physical health. What this means for her longer term treatment is that her medical and behavioral health team will be able to specialize her therapy, etc. based on the knowledge and experience that they have Anorexia specifically.

ARFID stands for Avoidant/Restrictive Food Intake Disorder. People with ARFID are very limited in the types and quantities of food they are able to eat without extreme anxiety. Similarly, Anorexia results in extreme weight loss and intense anxiety around eating and food in general. Those suffering with eating disorders that involve restrictive eating are not willfully or obstinately avoiding food, they are fighting against the urge to deny themselves one of the most basic human needs—food—and suffering severe anxiety around it. This deserves our compassion and a supportive family and treatment team.

This has been Willow’s experience every day, every meal for many months now as we wait for an opening in a quality treatment center. Witnessing her struggle has been heart wrenching. (Updates follow, she is now in a treatment program—9/22/21)

Currently there is no high-level medical treatment available for eating disorder in Alaska. Seeking treatment out of state is costly (in our case all out of pocket) and is absolutely vital. The course of care recommended by Willow's medical/behavioral health team locally is immediate Inpatient treatment (24/7 supervision for patients experiencing medical instability) followed by Residential treatment (for patients who need 24-hour support, but not medical support/stabilization) and then finally Partial Hospitalization (daytime care/treatment while sleeping at "home"—in this case temporary housing near the facility for an additional 3-4 weeks—that allows for the patient to practice the skills they have learned in higher levels of care with their family for successful recovery at home).

The ultimate cost of treatment will be upwards of $125,000. As a family, we have reached deep into our personal resources to find the money to get her in the door. Now it’s time to ask for help from our family, friends, our community, and the kindness and generosity of strangers. (Again, please read the updates below--this initial estimate of cost is about half of what it will end up being which is closer to $225,000. 9/22/21)

(From Debi) Willow is my granddaughter and my best buddy. She is fourteen years old and has delighted me with her thoughtfulness, her humor, her talent, all the years of her life.

Let me tell you a story. One day when Willow was about six years old and spending a lot of time with me in my gift shop/gallery while her mom was at work a customer came in, fell in love with a piece of jewelry, then declared that as much as she wanted it she couldn’t afford it. Willow ran out of the shop coming back a few minutes later with her coin purse filled with pennies, nickels, and a few precious dimes and quarters. She handed it to the customer telling her that now she could buy her necklace. Later she told me that I should let people pay what they could and even if they had no money at all if they really loved something they should have it. Her sweetness and empathy moved me so much I adopted her policy and honor it to this day.

We’re asking for your help in supporting Willow and her mom Jasmine through this enormously hard time in their lives.

We need help paying for travel and housing to and from the out of state treatment center.

We need help paying for each phase of treatment, including Inpatient care, Residential care and the Partial Hospitalization Program—which will include Jasmine and Debi traveling to the treatment center with Willow initially for admission and near the end of Willow's treatment, Jasmine and Willow's participation in several weeks of in-person family education and continued recovery therapy.

And finally, we need your help filling in the gaps that the loss of income will mean for Jasmine who is a single parent and sole provider for herself and Willow. It’s a big ask; but if not our community, our family, and our friends, who else?

To help keep our family afloat in this storm is going to take all of us, pitching in, how and where we can.

Please let this open discussions with your children and loved ones about eating disorders, don't be afraid to ask for help! Eating disorders can become all consuming for the sufferer and get out of hand quickly when kept secret. (This is Willow's addition to all of this, she wanted to make sure that we let people know how important it is to get support if you are afraid that you may be struggling with an eating disorder.)

The first, best, and most direct help you can give is through this GoFundMe effort.

Please share this GoFundMe far and wide: 5 dollars from a stranger matters. 10 bucks from one of your coworkers makes a difference. Literally every dollar counts. Anything you can offer is greatly appreciated!

With our deepest gratitude,

Jasmine & Willow, Debi, Gene, Coleus, Scot, Finn and River

Some of the things we have learned about eating disorders:

• An estimated 30 million people in the U.S. have an eating disorder.

• 95 percent of people with eating disorders are between the ages 12 and 25.

• Eating disorders are the third most common chronic illness among adolescent females in the United States.

• The causes are not fully understood. They are complex. Nobody is to blame.

• Eating disorders affect all genders, all races and every ethnic group.

• Eating disorders have one of the HIGHEST death rates of any mental illness.

• Full recovery is most likely when the disorder is diagnosed and treated early and yet only 10% of patients receive treatment.

Willow is one of the fortunate 10% who has access to treatment and has been diagnosed early on in her struggle with this disorder. We will move heaven and earth to provide her the care needed.

https://www.feast-ed.org/avoidant-restrictive-food-intake-disorder-arfid-what-is-arfid-and-what-are-the-available-treatments/

 

Willow and her cousin Finn on the 4th of July, 2021

 

Willow and Jasmine in Juneau, AK May 2021