Welcome To Eva's Miracle

Eva Grace is a 12 year old girl with Spinal Muscular Atrophy type 1 (SMA).

• SMA is a neuromuscular genetic illness which causes the muscles to weaken and eventually stop working.
• Children with SMA don’t usually live to see their 1st birthday.
• There is no cure, but there is now a treatment which slows the progression of the disease.

Thankfully, Eva started it 6 years ago and it has been very successful with maintaining her muscle strength and even making her a little stronger and her overall health has even been more stable!

Eva had a typical birth and was diagnosed at six months, shortly after that, she had difficulties swallowing and breathing so that led to being in the hospital for 5 months and Eva was not expected to live. They told us she would never be able to come home. At times she wasn’t expected to make it until the end of the week.

She suffered many respiratory illnesses and was unable to get the surgery she so badly needed to survive. Being the miracle child that Eva is…and with a lot of prayers, she was able to rally and get strong enough to be able to have the surgery!

At 10 months old, she had a tracheostomy and G-tube placed. She cannot breathe on her own and is basically a paraplegic with some movement in her hands, which enables her to drive her power chair, wave, and do some activities with her hands. She can not support her own head and is floppy like a newborn. She will never talk. She’s completely dependent on a ventilator to breathe and can not swallow to eat, so she needs a feeding pump that delivers food directly into her g-tube in her belly.

Eva requires around the clock care and although it’s approved by her insurance to have full coverage, there is often times problems with staffing and getting qualified nurses. So that leaves it all on mom to care for Eva sometimes days at a time without sleep or a break.

On top of that…mom was also a miracle baby, she was born with congenital heart block and went into heart failure at 5 years old and had a pacemaker placed. At the time, mom was the youngest person to ever have a pacemaker put in. It wasn’t even guaranteed to work, or that mom would survive. But thankfully mom has been fairly healthy, but still requires a pacemaker. The every day stress and exhaustion doesn’t make life easy.

Eva has a VERY happy life! She goes to museums, amusement, parks, birthday parties, and other activities. She’s a cheerleader and is in fifth grade. Her nurse goes with her to school. The family works very hard to make it possible for her to do everything else little girls her age do, she just needs more assistance with everything. She is an extremely happy little girl. She loves anything Disney and has been to Disney World twice.

She’s quite spoiled, but it’s very well deserved. She’s called her Eva the diva because she is extremely girly. Eva is the bravest, smartest, most patient and resilient little girl you’ll ever see! She teaches everyone MANY lessons about what is important in life and her family strives to have her be understood and included in society because her brain is typical, she’s just trapped in her body that doesn’t work.

Mom is unable to work since she needs to be cared for around the clock so we struggle daily with expenses. She currently has a handicap accessible van, but it’s 15 years old and has a leak in the gas tank that will be too costly to replace, so it’s been patched which is a temporary fix. So she’ll need to get a new van as soon as possible. Unfortunately the prices on these vans are extremely overpriced so all the family can do is try to fundraise and bank any money possible to be used to get a new van.

Despite Eva‘s sad story and the extreme difficulties that it’s been on mom to care for her, mom says still can’t imagine life any other way. Eva is special such a special little girl she makes all the struggles worth it!