Colette Stella Scheuer

Before being admitted to the hospital on January 27th, Colette was experiencing gross motor delays due to hypotonia (low muscle tone). These developmental delays prompted Mitchell and Chrissy to start seeking medical intervention for Colette as they neared her first birthday. However, before they could get any clear explanation or diagnosis, Colette had a prolonged seizure that warranted their current extensive hospital stay. Once admitted to the Children’s Hospital of Michigan, Colette’s seizures continued to be difficult to manage and keep under control. In addition, further investigation was necessary in order to determine the cause of the seizures. On February 20th, Colette was diagnosed with POLG, a mitochondrial disorder that is not curable and rapidly progressive in nature.  More specifically, Colette’s symptoms fall within a certain category called Alpers-Huttenlocher syndrome (AHS). This is one of the more severe conditions associated with uncontrolled seizures, liver failure, possible other vital organ failure and prematurely passing away from this disease. Chrissy and Mitchell are working with multiple PICU doctors, neurology, genetics, PM&R and a pediatrician that specializes in hospice & palliative medicine to help with Colette’s plan of care, treatment goals and quality of life.

During Colette's stay at the hospital she has undergone extensive testing, procedures and treatment. Chrissy and Mitchell, along with their amazing hospital staff at the Children's Hospital of Michigan have gone above and beyond to give Colette the best possible care. Chrissy and Mitchell have been essentially living in the hospital, alongside Colette, pouring every minute of their every day into their sweet baby girl. Please join us in supporting the Scheuer family to ensure that the last thing Mitchell and Chrissy be burdened with right now, during this incredibly difficult time, is medical bills.

Mitchell and Chrissy are extremely moved by all the support they have received from family and friends over the past month. They ask that you please continue to pray for Colette, and that God be the source of strength in their family right now as they navigate through these very uncertain times.

Together, we are #cocostelliestrong.

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The Go Fund Me donation you make today will go towards helping cover any remaining or uncovered insurance costs for the following medical treatments and procedures listed below, as well as costs for any future, continued hospital or at home care Colette may receive. 

Current medical expenses to date:
2 ambulance rides
Countless seizure medications, supplements & vitamins
CT scan
Multiple EEGs over the span of several days
2 MRIs
Eye examination
2 central line procedures
2 intubations & extubations
Daily chest X-rays while intubated in PICU
Breathing treatments, steroids & nasal cannula required
Multiple ultrasound guided peripheral IV line procedures
Echocardiogram
Spinal tap
Kidney ultrasound
Abdominal and pelvic ultrasound
Daily blood, urine and glucose checks
UTI treatment, antibiotics & catheterizations
Epilepsy panel
Genetic testing
Endocrine testing
Metabolic testing
Nutrition consultations
NG tube for feedings
Inpatient rehabilitation including PT, OT, speech & recreational

Future medical expenses:
Seizure medications, supplements & vitamins
Keto formula
Lab work
Continued follow up appointments with specialists
Possible medical procedures or surgeries
Assistive devices
In home nursing care

Donations will also be made to support medical professionals in their research to better understand, identify and treat individuals with POLG.

If you would like further information on mitochondrial disorders or Colette’s specific syndrome, please click on the links below.

https://www.statpearls.com/ArticleLibrary/viewarticle/17389 https://www.ncbi.nlm.nih.gov/books/NBK26471/