This campaign has reached it's goal: Saving Livia's life. You can read how Livia is doing in the latest update. The original story remains below as a testament to Livia's journey. To everyone who contributed with their love and generosity: THANK YOU from the bottom of our hearts. We remain ever so grateful to the power and love of community. <3
This is Livia's updated blog link
Livia, our 17-year-old daughter and oldest sister of 3 girls, has struggled with an eating disorder since she was 12. Until then, she was part of a happy family that enjoyed the ups and downs as well as the usual challenges of any busy family. Growing up in Brookline, MA, Livia went through all the normal stages of early childhood. She did well in school and on the soccer field, and had playdates. She did prefer order, cleaning up, and staying in between the lines. In 3rd grade she reported feeling different and alone. She had difficulty with transitions and worried about not being good enough. At the time, visits to therapists did not set off any alarms. “Just part of growing up.” we were told. In 5th grade, Livia started focusing on nutrition and limiting herself to certain types of food. She also exercised increasingly. Though worrisome, at the time we never expected her to develop a mental disease this devastating emotionally and physically for her and for our entire family. During the past 5 years Livia should have entered puberty, but instead her life has been taken over by obsessive thoughts, rules, anxiety, depression, rigidity, anger and panic, all of which manifests itself as anorexia. Livia has not grown since she was 12, at 4’8” (1.45m), she weighs 70 lbs (32kg). Ironically, she is obsessed with food, can only think and talk about food, shop for food. Yes, she loves food, yet she cannot allow herself to gain weight. Instead, she ponders, weighs, arranges, calculates, and photographs food. In her head rages a war of control, obligation, order, disorder, can’t haves, must haves, shouldn’t haves, feeling full, feeling empty. In addition, exercise has become an addiction. School is overwhelmingly stressful, yet she still keeps good grades. Our home is the war zone where this all plays out, with every family member drawn into the battle. Inside Livia lives an inner dictator that suppresses the sweet, bright, original, capable and powerful girl that she actually is. The ruthless dictator controls Livia, but also commands everyone around her. It’s hard to see beyond the terror when Livia is hidden so far away. Some days Livia emerges to fight with amazing insight into what’s happening inside her head. Livia’s sisters Mae (15) and Amelie (11), missing their big sister and missing out on a carefree youth, remain incredibly and admiringly supportive. I am thankful for them and my family of friends who continue to support me through these difficult times, but am heartbroken and desperate. Still I have to keep faith that we, together, can turn this around. Many people have said “ok, come on, send her to the hospital, a shrink, therapy, a program.” Some even urged to just “lock her away and get her fixed.” We’ve been there, done that and tried it all. It’s just not that easy!
Treatments so far
Livia has been in several treatments that all focused only on food and forced her to eat. While still living in Boston, after the first hospital stay at Boston Children’s, there were residential, day, and outpatient eating disorder programs, therapy sessions, nutritionists, the Maudsley Method. Although Livia would gain weight, she always relapsed soon after. The root causes and distorted thought patterns of the disease were not addressed.
Two summers ago (2015) we moved to the Netherlands for mainly three reasons: for my job in cancer research, for less expensive education, and in hopes of a breakthrough for Livia and our family. Sadly, she continued to lose weight. Within months of our arrival she went to an eating disorder clinic - for 4 months! This clinic, headed by the national eating disorder expert, claimed an evidence-based approach. Their slogan was “eating moments are therapy moments”, yet Livia lost more weight than ever (came in at 35 kg, left at 29 kg). Besides mealtimes, apart from an occasional therapy session, the kids were left to hang around on their phones, roam the halls, and work out in their rooms, with hardly any supervision. Livia exercised to a body-building scheme, and felt trapped in a place where she felt more estranged than ever, and she knew her problems weren’t understood or addressed. She ran home twice -a two-hour journey – while the staff didn’t miss her until she was home. Livia begged us to take her out of there, but we stuck with what the professionals were telling us. Until the professionals themselves gave up on her treatment and discharged her. Livia was told her condition was so chronic that she wouldn’t get better. She gave up all hope. We found her new therapists, nutritionist, doctors, to no avail so far. In hopes of more diagnostics and medication support, we have not found a psychiatrist who doesn’t defer us back to the (kind of) clinic that traumatized her. Every month, a girl dies after having spent time in a similar place. The documentary “Emma wants to live ” reported one such girl recently on TV in the Netherlands. The nation was shocked, but no solutions emerge.
Livia wants to recover!
Livia insists she will not follow Emma’s path. She wants to live, for a future, a fulfilling life. Here is our current situation: Livia is desperate, as is our family. She wants to live, struggles through every day to eat her counted calories, but does NOT gain weight, is still without menarche (period) at 17. Victim to her own rigid scheme of healthy foods and exercise, she craves freedom from her mind’s dictator, and is BEGGING to be helped. She feels powerless to overcome the dictator by herself, even with the love of a supportive, but broken, family.
What she says she needs, is a big upward lift, NOW, and asks desperately to go to a specialized program focusing on tackling the underlying obsessive thoughts and behaviors -- not just the food intake.
This summer (2017). In the US.
There she foresees her path to recovery. Livia (like us) has no faith in other local clinics that appear similar in approach to the one that only worsened her disease. We feel her self-motivation is key to recovery and there is no time to lose.
After carefully considering several treatment centers, we have selected the Carolina House , that has a holistic and multi-disciplinary approach in treating concurrent mental illness alongside eating disorder behaviors. Several success stories from people who have attended have given us hope that Livia’s recovery is truly possible. Unfortunately, the treatment is very costly, and we don’t have the right insurance or the (single income) funds to pay for it.
Will you be part of Livia's recovery journey?
THANKS to the AMAZING response of so many loving and generous donors over the past 2 months, Livia was admitted on July 3rd and started her recovery journey in North Carolina. Progress seems to happen, albeit very slowly.
Livia's physical and mental health was severely compromised, even more than we dared to imagine, and she will need a longer stay than initially thought -we can not shortcut her chance to recovery. In addition, after attaining the goals of the initial residential treatment, Livia will need to attend a step-down program that Carolina House offers to help the transition back into 'life' with its triggers and challenges to prevent the high risk of relapse and support long-term recovery. Fortunately, Livia's uncle -my brother- and his family live close by to provide important additional support.
While the funds raised so far cover a large part of the initial residential treatment Livia is getting, we still need help defray the cost of the extended duration as well as the step-down program (partial hospitalization and intensive outpatient program) which could take another 2 months at least. Unfortunately, the out-of-pocket costs for the longer residential treatment are anticipated to amount to AT LEAST 60,000 -75,000 USD, and the 2 month stepdown treatment program to maintain and support long-term recovery will require extra funds . Because of this new reality, we increased our fundraising target .
Please donate ...whatever you feel appropriate, and invite others to donate. Your generosity will have a huge impact on our lives and will quite possibly save the life of a promising young woman. I will inform you of each step of Livia’s recovery.
We who love and believe in Livia THANK YOU from the bottom of our hearts. We are cautiously optimistic, for the first time in years, thanks to the support of an incredible community providing love and hope.
Louise & family
Where did the money go?
We are overwhelmed by people’s generosity. We want to be as transparent as possible so are sharing what we spent the funds on below for your information.
Residential treatment $60,000
Out-patient Step-down $25,000
Medication & Lab work $5,000
Travel & Transportation $8,000
Food & living expenses $6,000
Crowdfund & transaction fees $6,000
THANK YOU SO MUCH!!