Hello, we are Ember's Parents Joshua, and Michelle. Ember is the youngest of our 4 children. For the past year Ember has been struggling with many medical issues. When Ember was 4 months old she stopped growing, at this time she also lost her ability to hear and was diagnosed with moderate hearing loss. Her Doctors at the University of Michigan could not figure out why she stopped growing and they had her hospitalized with a failure to thrive diagnosis when she was seven months old. During her stay she saw many different doctors. She had more labs done than we could count. She gained half of a pound over a 10 day stay and they told us we could take her home while they waited for the lab work they sent out to come back so we would have answers. Unfortunately, we didn't get much in terms of answers. Ember has high blood pressure, thrombocytosis, Ichthyosis, high eosinophil counts, extremely high IgE levels, hearing loss, several vitamin deficiencies, multiple severe allergies, among other things, and yet the cause of her severe malnutrition is still unknown.

Ember’s genetic skin condition, called Ichthyosis, is extremely itchy and uncomfortable for her at all times. Her skin never stops peeling and she makes large gouges in her skin, so we have to put special sleeves with mittens on them on her to stop her from hurting herself. She currently puts a new hole in her sleeves almost daily. I am constantly buying new sleeves and patching holes. Even with the sleeves, she started biting large chunks of skin off of her arms to relieve the itch. We placed arm restraints on her arms to keep her from reaching them to her mouth and it helped. Her dermatologists kept prescribing different steroids but she kept having reactions - causing infections. During her first hospital stay she had an antibiotic resistant strain of Staph. We did not know this at the time and she developed cellulitis. Her finger and entire foot were swollen for days. She was put on oral antibiotics and her finger stopped swelling but her foot remained red, and swollen. Ember’s dermatologist refused to treat her staph infection when the antibiotics weren't working. Ember could not put any pressure on it and could not crawl or stand. She was 8 months old at the time was starting to crawl and pull up to stand before the infection. Ember had to be put under anesthesia twice that day and we were unable to feed her until night time. Normally the surgeon said that they would surgically remove the infected parts of tendons, joints, and bones in her foot, but, due to her skin condition the risks of her being able to heal and not develop another infection outweighed the pros of the surgery. She was alternatively placed on IV antibiotics through a PICC line for 7 days. Ember went on to develop Arthritis, Tendonitis, and ultimately Osteomyelitis in her foot as a result of the staph infection. Because of this infection, Ember may have problems in her foot for the rest of her life.

Ember went on to have 3 anaphylaxis episodes requiring the use of EpiPens and monitoring in the hospital. After her first episode, she caught the norovirus from the hospital she was monitored at. She developed Hypernatremia and had multiple seizures in the hospital. They had to give her fluids for 8 days and closely monitored her sodium levels to bring them down slowly. Ember was now down to weighing only 12 pounds. She spent 4 nights in the Pediatric ICU and had to have blood draws every 4 hours. Later that hospital stay, they addressed her failure to thrive diagnosis again. She gained her weight back from before the norovirus and they said she was okay to go home- she was 14 pounds and 8 months old at discharge.

Ember is currently still not gaining weight, her doctors and therapists don't have any other avenues to explore, and we are out of time. They suggested we seek help at the Cincinnati Childrens hospital.

Ember has had 3 appointments so far in Cincinnati. There, they have since put together a care team of specialized doctors to teat her and find the causes of her malnutrition. There is great concern about what to feed Ember to help her get all the calories that she needs. She currently has 12 IgE allergies and there is not a formula that they know of that she is able to have. Ember currently weighs just over 14lbs and is 13months old. She has yet to double her birth weight and is slowly starving.

Her doctors in Cincinnati have told us to plan for a minimum of a 2 week inpatient stay next week, and at least a month outpatient in Cincinnati close by where her doctors can monitor her. She will be getting a feeding tube placed, along with many monitors and a PICC line to hydrate her and draw what they said will be a lot of blood work from, an Endoscopy to see if the cause is in her upper GI tract, and an ABR so that they may gain insight to her hearing loss. She has since gained her hearing back over a slow period of time. Her doctors refer to it as waxing and waning and have told us to learn American Sign Language because it is likely to happen again and this will give her a way to communicate. She cannot yet say any words because of this.

Since Ember has severe malnourishment her doctors in Cincinnati have warned us that there is a very big risk that she may not make it. They said it is likely she will get Refeeding Syndrome, which, has many complications since her malnutrition is so severe.

Please help support Ember and our family at this time by saying many, many prayers, and helping us to afford medical expenses, travel costs, food, and our mortgage while my husband is out of work. Any and all donations are greatly appreciated and mean more than you could imagine. Thank you, for making a difference in our lives and allowing us to focus on Ember instead of where our next meal comes from.