Ava Grace Wants to Walk

Friends, Family, Countrymen...lend me your ears. I come, humbly and lovingly, to ask for your help.  As some of you may, or may not know, my niece, Ava Grace Koleber, has Spastic Diplegic Cerebral Palsy.  She and her sister, Olivia, were born 28 weeks and 3 days, (3 months) premature. During their time in the NICU (99 days), Ava developed periventricular leukomalacia (PVL).  PVL is a brain injury that affects premature babies. In the NICU, the doctors told Michael and Angela that this could cause CP.  Ava was eventually diagnosed with CP around 1½ and currently, at 3½ years old, Ava cannot walk.  Her CP causes her to have extreme difficulty with daily physical movements that we take for granted. 

The last 3½ years have been intense for our little angel...lots and lots of doctor's and specialist's visits, lots of painful physical therapy, one surgery already under her belt and botox injections in her legs.  The hardest part though, is watching her not be able to give chase when her sister and cousins run around.  Angela is always there to make sure she doesn’t get left out too much, carrying her so she can chase her cousin and sister or holding her up to play pretend at the toy kitchen.  Ava does this all with the most beautiful smile that could only grace a child of God.  She doesn't know she is what others might call "disabled", but she does know one thing; she wants, oh so desperately, to walk. 

My sister and her husband have spent countless hours, staying up into the wee hours of the morning, researching surgeries and treatments for Ava, all while attempting to maintain a "normal" lifestyle, and working hard to provide for their family.  They have finally found a medical procedure that they pray and hope will allow our Ava to walk. A surgeon by the name of Dr. TS Park has developed a surgical technique called Selective Dorsal Rhizotomy, which is intricate spinal surgery. Dr. Park must sever nerves in Ava's spinal cord to allow her legs to have less spasticity and therefore give her the possibility of walking.  The outcome of the surgery is hopeful but nothing is guaranteed. Dr. Park has performed over 4,000 of these surgeries, the most for any one surgeon; he even travels the world to do so. He predicts she will be able to walk with canes or crutches and possibly even full independent walking, but it won’t come easily or quickly. This is our best shot for Ava to live her dream and walk. 

As you might imagine...none of this comes cheap. The surgery is expensive and this means they will meet their deductible and max out of pocket of $6,000 early in the year. The necessary physical therapies and the therapies not covered by insurance, the specialized school, the need for a wheelchair, adaptive seating, and daily occupational accoutrements for Ava all cost...a lot. It's getting harder to afford now, especially on one salary alone. It breaks my heart to see that medical fees can literally break a family financially, all in the quest for something we all take for granted...a normal life where we can get out of bed in the morning and walk on our own two feet to the kitchen, the bathroom, to our children's room, to our workplaces. This can literally be the first step for Ava to achieving a part of that in her life. 

Ava's surgery is in Missouri in a week and a half  on January 23rd.  Angela, Michael and the girls will be making the 10-hour drive to Missouri and staying in a hotel. They will need to stay in Missouri for almost two weeks for the pre-op and post-operative period. Dr. Park and his team will observe Ava after surgery and ensure a full recovery in the hospital.  The rehabilitation for Ava will be extensive...and expensive. The sooner we can help fund this, the easier it will be for the family to know that they can concentrate on Ava's rehab and get her healed, healthy, and walking, without worrying about the financial burden that it will impart on them. 

Asking for monetary help in this manner is not something that Angela and Michael, nor I, ever thought we would have to do. It is also something that does not come easy for us. We have been raised to work hard for everything that we want and earn it.  What I have learned through this whole process is that sometimes...just sometimes...we need to reach out and ask for the loving help of others.  We need to swallow our pride and take a hard look at the situation and make a tough decision.  We do not want to have to ask all of you for help...but we need to. 

So, as I conclude this humbling plea for help, all I ask is that if you are unable to donate (and that's completely and utterly ok)...please just say a prayer, or send well wishes, or think of Ava over the next few weeks. This will be a hard time for her to recover from her spinal surgery. No 3½ year old should have to go through the amount of physical rigor and pain that she has had to go through in her young life and yet, she works hard every day and does it with the biggest, sweetest, most grateful smile. 

On behalf of Angela, Michael, Olivia and especially Ava...we thank you all for taking the time to read this, and we know that with God's eternal strength and your help...Ava will get her wish. Ava will walk tall, just like the rest of us. 

Angela has started to blog to share Ava’s story and their journey if you want to read a bit more about their lives, you can do so here: www.avasgrace.com


Thank you all, and God Bless.  

Love, Rob