The Kids

Our Guests of Honor 2016

Audrey Ellerhorst

WISH LIST:
  1. New carpet for van floor
  2. Tricycle
I can help with this wish list.

Audrey was born on August 8th in 2003. Audrey will be 13 years old this August! Almost a real teenager!

On April 19, 2001, Rachel was diagnosed with Trisomy 18. She spent April 19 thru April 24 in the Neonatal ICU; we stayed with her and were allowed to sleep in a room down the hall.

Meet Audrey

When we found out Rachel had Trisomy 18, we were very devastated.

Trisomy 18 is a chromosomal disorder resulting in a syndrome characterized by specific dysmorphic (small) features and organ malformations. With Trisomy 18, there are three copies of the 18th chromosome in every cell of the body rather than the usual two. This syndrome is also known as Edward's Syndrome. Rachel has very few of the many physical deformities that are generally found.

The incidence is 1/8000 live births, with most resulting in stillbirth.

The female to male ratio for having Trisomy 18 is 4 to 1.

Originally our doctors gave us no hope. Trisomy 18 has a very poor prognosis.

  • 30% die by age 1 month,
  • 50% by age 2 months,
  • 90% by age 12 months,
  • and 99% by age 10 years

  1. Rachel has some Heart Defects typical of Trisomy 18:
    • Ventricular Septal Defect - A hole between the lower chambers of the heart that prevents the heart from pumping blood correctly; a heart murmur is generally heard with this congenital defect. Rachel’s VSD is fully occluded (on its own) with no shunting.
    • Atrial Septal Defect - A hole between the two upper chambers of the heart which makes it difficult for the heart to pump sufficient oxygen-rich blood to the body's tissues; a heart murmur can be heard. Rachel’s ASD is on the small side and poses no current threat to her.
    • Patent Ductus Arteriosus - A congenital heart defect in which closure of a duct fails to occur, resulting in abnormal direction of blood flow. Rachel’s PDA was large and required a coiling procedure in May 2002. The procedure had to be repeated in September of 2003 as the original coil began to leak.
  2. Rachel has a horseshoe shaped kidney. Until she was 11, she was screened for Wilms Tumor (kidney cancer) and Hepatoblastoma (liver cancer) quarterly because 18's are significantly more prone to developing these diseases in their early years.
  3. Rachel’s brain is smaller than normal (microcephaly), but there are no structural abnormalities. She had amblyopia in her left eye, but eye muscle surgery corrected her vision, which is now normal.
  4. Rachel has low muscle tone and will not ever be able to walk since her muscles cannot support her skelaton.
  5. Rachel has some asymmetry in that her left side is smaller and weaker than her right.
  6. Rachel has had bi-lateral ear canal plasty to reconstruct her ear canals, which were extremely small. She also had ear tubes placed in both ears for many years. She continues to have sinus issues because her nasal passages are dysmorphic.
  7. Rachel has had an Adenoidectomy.
  8. Rachel has a severe curvature of the spine and wears a full back brace (commonly known as a TLSO) for support. If she were a typical child, corrective spine surgery would have been performed by now; however, such an intense procedure is extremely risky for an 18. The best thing we can do for her spine is to keep her body well exercised so that her lungs remain open and clear.
  9. Rachel was orally fed until spring of 2014, when it became necessary to have a g-tube inserted into her stomach. Since then, she has gained 15 pounds and is much healthier.
  10. We keep Diastat with Rachel at all times because she is prone to seizures due to her syndrome. Fortunately, Rachel has never had a seizure. Should 911 ever need to be called, Rachel is a “full code.”

We wish there were a cure for Rachel’s Trisomy 18, but there isn't.

We have learned to accept that and are continuing to do what we feel is best for our daughter.

We have already witnessed God’s great love for Rachel in the many wonderful people He has provided for Rachel’s care and support.

--Bob & Aimee

Clara Schablein

WISH LIST:
  1. Wheelchair tie-down system for van
  2. Full body swing – skill builder or Jennswing
  3. Bathing System

Clara Josephine Schablein is a beautiful 13 year old girl, born November 1st 2002. She lives with her Mom, Nora, Dad, Mike, older brothers Sam and Ryan and younger sister Hope.

Meet Clara

Landon Mock

WISH LIST:
  1. Bolster Swing
  2. Rifton R120 adaptive tricycle
  3. Donation to ring 14 delation in Landon’s name

Landon Mock is a sweet loving 8 year old little boy who at 3 months old started experiencing seizures. After many test and stays at Children's Hospital, Landon was diagnosed with a rare chromosome disorder called ring 14 partial deletion.

Meet Landon

2015 Honorees

Rachel Meier

Meet Rachel

Hunter Smith

Meet Hunter

AJ Stafford

Meet AJ

Charity Wright

Meet Charity

2014 Honorees

2013 Honorees