Aid baby Mary with her very rare genetic disease

On July 7, Benjamin and Erin Klinkner welcomed a precious baby girl, Mary Ruth, into the world. At birth she had some questionable skin rashes on her arms and legs that her dermatologist took a biopsy from and on July 9, they were informed that Mary had an extremely rare genetic disorder known as Incontinentia Pigmenti-IP as discovered from her skin biopsy results (Incontinentia Pigmenti - NORD (National Organization for Rare Disorders) (rarediseases.org). On the morning of July 10, Mary started having seizures every 30 minutes, which they were informed could happen with this disorder. She was taken by ambulance to Gundersen in La Crosse, sedated and intubated, and then airlifted to American Family Children's Hospital (AFCH) in Madison (2 hours from their home in Cashton, WI) where she will likely be for another three weeks minimum. It took 4 anti-seizure medications to stop the seizures which ended up lasting 24 hours. An MRI has shown extensive damage to the right side of Mary's brain as a result of the genetic disorder, IP. While this is not good news, her age is in her favor. Even though her brain will not heal itself and return to ‘normal’, we pray for the miracle that with the assistance of therapy, the left side of her brain will learn how to function without the right's full capacity.

This disorder is extremely rare and when reported, is more likely to present as a skin rash only. Since it can affect all the small blood vessels of the body, it can also cause complications with the eyes, teeth, and brain. While IP can affect the neurological system, it is in only in a very small number of cases. Despite its rarity and lack of research and clarification on the exacts of this disorder, they feel very confident that she is in the best care possible at AFCH. Mary has already met with specialists in immunology, neurology, genetics, dermatology, and ophthalmology. They are all working collaboratively to better understand, with minimal resources, the best plan of action for Mary.

When they do finally get to bring Mary home, she will likely have future seizures with the possibility of hospitalizations, many follow up appointments with her specialists in Madison, therapy sessions, and future challenges both physically and mentally that only time will reveal. Mary’s journey will be lifelong, given the amount of damage to the right side of her brain. Like we mentioned earlier, we pray that the left side of her brain can compensate and learn to function the whole body without the right's full capacity.

We continue to pray and trust in God’s healing power for Mary. He has already shown His works on her and is working through her daily. We have our full trust in Him.

One of the blessings this week is that Mom/Erin and Dad/Ben were finally being able to hold Mary again!

Mary has four older siblings at home; Jack (6.5 years), Anna (4.5 years), Noah (3 years), and Abe (2 years). Ben and Erin, along with Ben’s parents, also operate an organic dairy farm. Operating a dairy farm and raising four young kids is a 24/7/365 job; milking, field work, gardens, etc. keep them very busy while making trips back and forth to Madison. Friends and family have stepped up to help, but it is not easy for others to just step in.

The above information is from Ben and Erin’s Facebook page, as well as information provided directly from them to us. We are friends of theirs and met while they were students at the University of Wisconsin-River Falls. Ben worked for me at the University in the Animal and Food Science Addition. We have remained close to their family since they graduated.

This finance support will help to offset expenses not covered by insurance, chore help, lodging when needed, food, travel, as they commute back and forth to Madison. Erin has been staying in Madison to be at Mary’s side and greatly misses her other children. Mary will be in Madison until at least mid-August. There will be many additional expenses incurred during Mary’s life time journey with IP.

We thank you for keeping Mary and her family in your prayers. Steve and Sue Watters

We will be adding updates as they are posted on Ben and Erin’s Facebook posts on Mary’s Journey so far.