Meet the McNeil Family

Meet the McNeil Family

Monday, June 30, 2014

Shopping with Waverly

This girl. She is amazing. I have thoroughly enjoyed the first week of summer break. Having the kids at home is a treat and I am so thankful I am able to spend this time with them. 

We braved Wegmans last week for a quick shopping trip. They just bought this cool card pictured above. It is called "Caroline's Cart" and it provides a secure seat for a child with special needs in the cart. I was able to push the cart with Waverly sitting looking at me, while Oliver walked beside us. Definitely not easy, but doable. I love seeing progress being made concerning accessibility.

Wednesday, June 25, 2014

Last Day of School

Happy Last Day of School!!! We are now the very proud parents of a 2nd grader and a 5th grader. How has the time flown by so quickly?! Thanks to all of the staff at VES for another successful year. See you all in the fall.

My Little Alien

Waverly's 4th grade classmates put on a musical production of the 50 states last week. Parents and grandparents were there to see it. It was totally adorable and featured aliens coming to earth and learning about the different parts of the country. Of course, my favorite part of the entire show was seeing Waverly on stage. She wore her little alien hat and seemed to enjoy being on stage with her peers. One very special little girl stood by her the entire time and would fix her hat, hold her hands and keep her happy.

I wanted to weep. I wanted to cry tears of gratitude for a school community who included Waverly. For special classmates who always show compassion and kindness.

And I wanted to weep for the "if only". If only things were different for Wavey. If Sanfilippo was never uttered, what would she have been doing on that stage. I already know that she had a beautiful little voice. (Don't believe me - click here.) 

I try not to allow myself to think about what could have been very often. It isn't a healthy way to live and I find myself wallowing if I stay there too long. So I focus on the now, the moment.

Wavey did a great job as a very friendly and smiley little alien.

Friday, June 20, 2014

Opportunity to Help

As many of you know, Sanfilippo Syndrome is a rare disease. This means very little pharmaceutical money goes into research, given that our patient population is so small. (Not a large opportunity to make enough money to cover the research costs.) And federal funding for rare diseases has been drastically cut over the years. Therefore, it is up to families to come together to raise money.

There is some exciting research underway at Nationwide Children's Hospital. A few doctors there have been working for years on Sanfilippo Syndrome. They have done the mouse models, received approvals and are currently in the midst of a Natural History Study. Family run non-profits have funded them thus far. Moving into the human clinical trial phase is a huge undertaking and we need money to move it forward.

So Sanfilippo families are coming together with one goal: fund the clinical trial.

Please consider donating via our Crowd Rise page. 

Thank you!!

Thursday, June 12, 2014

Cape May 2014

We took a much needed trip to Cape May last week for a start of summer vacation. The town is relatively empty, everything is open and the weather was perfect. Plus it is restaurant week, so there are lots of specials going on for dinners out. We had a fantastic trip full of walks on the promenade, shopping in town, and playing in the surf. Waverly wasn't at all bothered by the sand this year and was content to sit under the umbrella with toys or take walks in the beach wheelchair. Oliver loves the water and enjoyed walking in the waves as much as possible.

The past few weeks have been incredibly busy, so this escape was perfectly timed. We made some lovely memories, released some stress and returned refreshed to finish out the school year and start summer break.

Sunday, June 1, 2014

Jill's House Gala

Matt & I were honored to attend the Jill's House Gala on Friday night. They showed the film I posted below and asked us to speak. It was a magical night at the Ritz Carlton hosted by Wayne & Catherine Reynolds with a private show by Martina McBride. There were hundreds of people in attendance with over $1million dollars raised that night alone. Simply incredible!! We were able to sit with people who have given/raised millions of dollars for Jill's House. What an opportunity to personally thank them - as a parent who has been so positively impacted by such a special place.

I was a bit nervous throughout the night and didn't eat very much. So after the event a few of us went around the corner to a diner for some food. I heard a few patrons wonder aloud how we look way too old for prom.

Below is a copy of what I said after the showed the film about our family and Jill's House.

* * * * * * * * * * * * * * * * * * *

The day Waverly received her diagnosis was such a dark day. Life took a sharp turn towards the unknown. I remember driving back to my parent’s home. Waverly was in the backseat. Ever the beautiful singer with impeccable timing, she began singing “If you’re happy and you know clap your hands”. The irony of that moment. A little 4 year old girl was just dealt a terrible blow. Yet in her innocence, she was completely unaware. She was genuinely happy.

We have all changed in 6 years since we first heard the words Sanfilippo Syndrome. 

Matt resigned the Foreign Service as he felt he could no longer in good conscience commit to being worldwide available. I have made the choice to stay home to take care of the kids’ many needs—in one calendar year that might mean as many as 300 separate medical and therapy appointments. We moved far out of the city where we could find a one story home. We spent an inordinate amount of money, not on the car of our dreams, but for a minivan with a wheelchair ramp.

Dreams of living overseas and exposing the kids to various cultures have gone to the wayside. Our dream now is simple. Celebrate the small things, make memories daily. Our world has shrunk and we move through life at a different pace than most. We know what playgrounds have a handicap accessible swing. We know what restaurants can accommodate a wheelchair easily.

And we know Jill’s House. A haven. A place created specifically for kids like Waverly & Oliver. A place special children can call their own. Where every detail was created with them in mind. No short cuts or hand me downs. No need for explanations. No need to forgo an event because it is inaccessible. Just a beautiful space for them to safely explore and enjoy with wonderful people. 

Wavey & Ollie now get to experience some quintessential aspects of childhood, like sleepovers and camp. They are forming relationships with other children, staff and volunteers. They have celebrated birthdays with friends, lounged with their peers to watch a movie together before bed. Giggled on the swings and splashed in the pool. A taste of a typical life.

And we have the opportunity to miss them. It is bittersweet, missing them. When the kids are at Jill’s House we cannot help but think about the future. The quietness of the house, no feeding pump beeps or shrieks of excitement for Mickey Mouse Clubhouse. What will our lives look like when they are no longer here with us.

As I said in the video, my sorrow is deeper now. I know them more. I love
them more. I will miss them more.

But for now, we focus on the present. The two beautiful gifts we have been given. And the incredible impact their short lives are having on the world around them.

As the cornerstone of Jill’s House promises all who enter - “Come to me all you who are weary and burdened and I will give you rest”. The parents will have rest. They can rest assured their children are well cared for.

Lon & Brenda, thank you for creating something beautiful from your pain. Jill has changed our lives and the lives of so many in our community. 

And thanks to all of you for attending this magical event and for listening to our family’s story. Thank you for seeing the needs of families who so often feel over looked and for providing the resources for them to find moments of rest, renewal and grace.