Ella Rose was born November 16, 2016

Heather and Jesse McKee finally welcomed their beautiful baby girl after experiencing several miscarriages. Ella Rose was exactly what they had hoped and prayed for. Her big brother, Ethan, was thrilled and a huge help in her development over the years.     

The first year brought many questions about her development of fine motor skills

As the months went on, her inability to stand or walk on her own, prompted more testing to be done. The results they received; no parent should ever have to hear.  They were told that Ella’s scans had been sent to and reviewed by specialists at several hospitals across the country. It was with utmost certainty that they concluded Ella has a form of Leukodystrophy.    

Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves. There are 50 different types of leukodystrophies. Each type of leukodystrophy is caused by a specific gene abnormality that leads to abnormal development or destruction of the white matter (myelin sheath) of the brain. There are no cures for leukodystrophies, and cases are highly variable, depending on the type. Because of the rarity of leukodystrophies, there are only a few hospitals in the country that specialize in seeing patients with these diseases.

In June of 2019, Ella’s Doctors at CHOP confirmed that she has Vanishing White Matter Disease (VWMD)

Worldwide there have only been around 300 cases of VWMD and in the United States Ella is just the 10th case with her very specific gene abnormality. This disease mainly affects children and symptoms are highly variable for each case. This disease affects Ella’s motor skills, speech, hearing, vision, and swallowing. The disease is progressive meaning Ella’s symptoms will get worse over time. Progression of the disease comes quicker if Ella experiences head trauma, infections, or sickness. The typical life expectancy is 5-10 years after diagnosis. There is no cure for Vanishing White Matter Disease. However, in June of 2021 the first ever clinical drug trial for VWMD began in Amsterdam. Unfortunately, Ella was not eligible for this trial because she is not able to walk unassisted.    

So Why a Nonprofit and What are Ella Rose’s Needs?

In short, Ella needs a miracle. Since diagnosis the McKee’s have been devastated to know the very real possibility of losing their little girl too soon to this disease. However, they have been extremely grateful for the outpouring of love from friends and family. They were also very fortunate to take a Make-a-Wish trip to Disney World in March of 2020. While the family does have medical insurance, medical expenses are still aplenty as Ella has weekly occupational therapies, speech therapies, and physical therapies. This is in addition to adaptive medical equipment like her specialized stroller, gait trainer, and foot braces. The family also travels to the Children’s Hospital of Philadelphia for Ella’s care. They are seeking support to help pay for these expenses. Also, knowing their time with Ella is limited they are seeking support to do as many things with Ella that they can, especially while she is still able to enjoy the many things life has to offer. Lastly, because of the rarity of the disease, it is very hard to get doctors and pharmaceutical companies to fund clinical trials and it is typically up to the families of patients to fund such research. If enough financial support can be provided there is the possibility for future clinical research to help Ella.  

How can you help?

GoFundMe: https://gofund.me/57c93634

PayPal: @AMiracleforEllaRose

Pictures by: Carrie Howland Photography

Heather and Jesse are working on creating a 501-c3 for Ella Rose and any other children who are suffering from this disease. They don’t want any other parents to suffer what both they and Ella Rose have gone through. Any and all help will be greatly appreciated.

Contact Margi Kyle, at mkyle@lknconnect.com.

Photo courtesy of Deborah Young Studio

For over 45 years, Margi Kyle, “The Color Doctor”, has built an astounding portfolio from the ever-important ‘Designer’s perspective’. Never idle, this Professional Interior Designer has contributed to this industry as an Interior Designer, Television Host, Mentor, Keynote Speaker, Educator, and Writer. Margi has Taught Interior Design of over 45 years and is the executive director for We Make Color Easy, The Dewey Color System. You can book a seminar or color course with her by emailing her at DesigningDr@gmail.com.

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