Medical Expenses for Grace Moreland

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Grace Randee Erin Moreland entered the world on Monday, October 9, 2023 weighing 7 pounds 7 ounces and 21 inches long to her ecstatic parents Katie Rohrbaugh and Aaron Moreland.

At birth Katie noticed Grace was missing the skin on the end of her fingers. They were told that she had sucked the skin off in the womb. However, they then noticed she started to get blisters on her body and at only 24 hours old, she was transferred to DC Children’s for a dermatology consult and spent 3 days in the NICU.

At nine days old, Grace traveled to Children’s Hospital of Philadelphia (CHOP) and was diagnosed with epidermolysis bullosa. EB is a rare genetic disease is also known as butterfly skin as their skin is similar to butterfly skin, very fragile. Many times we forget that skin is our largest organ, which makes this disease so complicated. A simple bump, seam from clothing, or even a diaper can cause those with EB to develop blisters and open sores.

Through genetic testing we have learned Grace has 2 heterozygous LAMB3 mutations that is usually associated with a more severe form of junctional epidermolysis bullosa (previously known as Herlitz) and can have significant complications and challenges.

There is no cure for EB and the challenges Grace faces will be difficult and a part of her daily life. Currently Grace’s parents are managing well at home with dressing changes and wound management. They will continue to go to CHOP in Philadelphia for management, education, and possible treatments and therapies. There are various clinical trials being conducted on various forms of this disease and research is currently being done to see if she may qualify for one of these trials in the hopes that it can improve the quality of her life.

Due to Grace’s condition, she will have open sores on her body and it will be complicated for anyone to care for her other than those trained. Infection control is critical. EB also affects your airway and it will be necessary to keep baby Grace away from as much sickness as possible. Because of this, returning to work is going to be difficult for her mother after her maternity leave.

Katie and Aaron face huge medical bills, that will be ongoing for the rest of Grace’s life, travel expenses, wound care supplies, and more. As things progress, new needs will arise to help make Grace comfortable and give her the best available care.

If you feel that you are able, please consider making a donation to help this family. Ideally we would like to raise enough for the extended amount of time that Grace’s parents will need to be off of work to take care of doctors appointments and day to day care of a child with a life threatening illness. All money will be used for travel, medical bills, supplies, and helping to subsidize the family’s large financial burdens and time when they are unable to work.

Katie and Aaron are wonderful loving parents, and Grace has two siblings at home. We ask you to consider supporting them to help take away the stress of finances during this time. Our goal is to help in this area so they can focus on spending as much time with their little one as they can and advocate for the best care possible.

You can learn more about this terrible and rare disease by visiting

www.ebresearch.org

Your love and prayers are always appreciated.