Abby posted about their touching story (as in go get the tissues) today and I couldn't help but share it too. As I told her, it makes Colin's incessant questioning and talking sound like sweet church music. It makes me want to run home and hug my children and never let go. I have healthy and happy children and I need to cherish that more often than I do.
Here's their story, as they told it:
Waverly is 7 years old and Oliver just turned 4. They were diagnosed almost 3 years ago with MPS IIIA, also known as Sanfilippo Syndrome. (I have a detailed explanation of the disease on the right side of the blog.)
Waverly is a beautiful little girl. She has always been kind and gentle. She was an easy baby. She was big for her age and lagged behind her peers in gross motor skills. Otherwise, she met all of the usual milestones. Around age 2, I started to grow concerned that she seemed to have slowed down in her development. Our pediatrician was not concerned, since Waverly was incredibly social and happy.
When Waverly was 3 years old, her little brother Oliver was born. He ended up spending 2 weeks in the NICU with heart and lung issues. We thought for a few days that he wasn't going to make it. During his time in the hospital, he failed his newborn hearing screening test. We discovered he had a severe hearing loss at 6 weeks of age. Our audiologist suspected Waverly had the same hearing loss, after meeting her. We thought that the hearing loss was the answer to our question of why she seemed behind the other kids her age.
The kids were fitted with hearing aids and the family moved to London for my husband's work. Waverly was enrolled in a preschool program run by speech therapists and OTs. Everything felt perfect.
After a few months, Waverly's speech therapist met with me to discuss her concerns. Waverly's behavior was not typical for a child with a hearing loss. She was concerned there may be something additional going on, so she referred us to a Pediatric Neurologist and a geneticist. We had multiple appointments, blood tests, urine tests and an MRI done in London. The doctor suspected there was an underlying issue, but no diagnosis was made.
I ended up getting a report back on some blood work from the lab. One item was flagged for follow-up. The neurologist was not concerned, but when I googled it I became VERY nervous. That particular item was associated with another serious disease. I grew tired of waiting for the doctors to figure out the problem, so I ended up flying back to the US with the kids.
We were able to get Waverly in to see the chief neurologist at CHoP. The doctors there were incredible! Waverly underwent a battery of tests. One month later, after Matt had flown back for the appointment, we sat in a hospital room along with 4 doctors. I knew that was a bad sign. They suspected Waverly had Sanfilippo and they received the confirmation test results that morning.
That meeting is a bit of a blur. I remember them telling me she had MPS III. They began to explain what that meant and I interrupted. I wanted to know if she was going to die. He told me that yes, children with Sanfilippo die tragically young. I then asked what treatments were available. He told me there was nothing we could do. We talked about Oliver and the potential that he had it as well. In my heart, I knew he was going to test positive.
Our life changed dramatically that day. I remember staring at Waverly in the back seat of the car during our hour long drive back to my mom's home. She was completely unaware of her fate. I wept. She sang "If You're Happy and You Know It".
I appreciate the little things now. That is a recurring theme here. Each smile and laugh mean so much more to us. We try to create memories with them whenever possible. We love them for who they are....while mourning who we wish they could be. They bring incredible joy to us and to all who meet them. They have impacted the world more in their short lives than most people do in a lifetime.
Waverly no longer speaks. She is beginning to have difficulty walking and uses a wheelchair. Her ability to swallow is getting weaker, so we have had to adjust her diet to dissolvable solids and purees. She will eventually need a feeding tube. She can no longer scribble with a crayon, put together a puzzle or stack blocks. Her fine motor skills are deteriorating. However, she is happy. She loves to look right in your eyes and smile. She loves to giggle and be tickled. She loves to watch Cinderella and Winnie the Pooh. She loves to hear us sing her favorite songs. She will sit and listen to her favorite stories, like "Sammy the Seal" and "Click. Clack. Moo".
Oliver has never really said a word. He is able to run and kick a ball. He loves playgrounds - slides and swings are his favorite. He loves to watch Mickey Mouse Clubhouse and Cars. He is a very active TV watcher - running, jumping and clapping throughout the show. He loves the water - bathtubs, sprinklers, pools - he doesn't care. He enjoys paging through his books, but refuses to sit still long enough to be read to. He enjoys dot painting. He loves sleep and will run to his bed for nap time each afternoon. He is my cuddle bug. He constantly runs up to me for hugs, always with a little tap on my back to let me know he really loves me. Ice cream cones are the way to his heart.
We are not sure how much time we have with them. The life expectancy for children with Sanfilippo type A varies. The doctors have told us between 10-18 years is typical. I am not convinced that there is enough time for the current research to save Waverly & Oliver. However, I would do anything to prevent another family from going through this heartache.
The amazingly bright spot of their story is that two of Shannon's college friends decided to start raising money in an effort to help the McNeil's buy their first home. They have already raised $174,597, but because of the real estate market where they live, this doesn't even begin to cover their cost.
Just this week their offer was accepted on this ranch home in Virginia.
Here is how her friends explain their plan on their website:
A Hundred for a Home is a campaign aiming to gather 4,000 friends who will donate $100 each in order to help the McNeil family with the purchase of a house, necessary home modifications, and out-of-pocket medical expenses.
We want to minimize their financial burden, allowing them to enjoy the short time they have with Waverly and Oliver. (Of course donations less or greater than $100 are greatly appreciated!)
As you can imagine, caring for two children who are slowly dying is an unimaginable, devastating experience. In addition, there are straining financial expenses that insurance will not cover like: co-pays, certain procedures, respite care, formula for tube feedings, hearing aides, wheelchairs, and more.
Major home modifications also need to be made for the children. The McNeil’s home must be completely wheelchair accessible which implies the widening of doorways, installation of a wheelchair-accessible shower, and ramp installations, just to name a few.
Please consider donating today. You can donate online:
or mail your donation to:
- McNeil Family Fund
- PO Box 147
- Jamestown, MI 49427
- Abby didn't ask me to post about this but it touched my heart in such a way, I couldn't not spread the word. I want to do all that I can for these 2 precious children and their parents. As a parent, I can't imagine what the McNeil's are going through. I guess each day is a ray of sunshine if they get to spend one more day with Waverly and Oliver.