Adelaida Kay Van Meter

Almost two months ago to the date (January 12th, 2012), I first learned of Adelaida Kay Van Meter. Her mother Sophia reached out to me after reading Kaitlyn's blog. Adelaida was also diagnosed with NPA at the age of 7 months old. I counted her in the 5 kids with NPA in the US (Kaitlyn, Wylder, Riley, Adelaida and Jacob (He has type A/B). 

Sweet Adelaida sleeping (20 months old)

Sophia called me on February 29th, Leap Day and also World Rare Disease Day to tell me that Adelaida had passed away around 2:00am on that day. At 20 months old, she had caught a cold and within just a few days, passed away. A few weeks prior, we had sent them a bunch of Kaitlyn's clothes and one of her special chairs since it really helped Kaitlyn at that age.

Adelaida and her Dad, Murro

It was a shock to me to get the call from her and I had this sinking feeling because I knew that not too long from now, I would be in her shoes. I could hear the heartbreak in her voice but also the joy of knowing that Adelaida wasn't suffering anymore. She asked if I would write about Adelaida on Kaitlyn's Korner so that more people would know who she was and the impact she had on others. I am completely honored and it is the least that I can do.

This is what Sophia wrote about Adelaida:

  

Adelaida Kay Van Meter

June 13, 2010 – February 29, 2012

 

Adelaida Kay Van Meter passed away peacefully on February 29 in a loving snuggle with her mommy and daddy at our home in Wellfleet, Massachusetts. She was 20 1/2 months old. She had a very happy life, and suffered very little. Adelaida was diagnosed with the incurable, untreatable lysosomal storage disease “Niemann Pick Disease Type A” (NPA) at 7 months of age.

Adelaida loved everyone and everything. She especially loved singing songs, baby dolls, reading books, and going on adventures. Noone ever told Adelaida she wasn’t supposed to be the happiest little girl in the world! Her vibrant personality brought joy to the lives of her family and friends. Adelaida was an old soul. Words cannot express how she will be missed. There will be an enormous emptiness for a long time.

Adelaida had been declining neurologically since December, but was still mostly comfortable and content. I have been working only about 15 hours a week since then, so I have been spending a lot of quality time with her and Murro (my husband). Last week, she caught a cold that Murro brought home. Within a couple days she was refusing food (except a few spoonfuls of vanilla ice cream), and hospice came in a couple days later to make her comfortable. We called our families and everyone was able to come the next day to say goodbye. Even though she was on morphine and sleeping all the time, she woke up for each person and listened to what they said and squeezed their hands. Murro and I both held her for about an hour each on that evening. She made it clear to us that she was enjoying being held by holding our hands, cooing, and breathing calmly (when we weren't holding her, her breaths were extremely loud and labored). Later that night, when I woke up to give her medicine, her axillary (armpit, which means her temp was really about 1 degree higher) temperature was almost 105. While I was talking to her and putting a cloth on her forehead and neck, she started breathing slower. I woke up Murro. We cuddled with her for about an hour, and then her breaths slowed to a stop. It was peaceful and beautiful, without suffering.

Adelaida's 1st Birthday

We are grateful and feel so lucky that Adelaida did not suffer, which we have known to be a certainty for the three of us since her diagnosis January 2011. We have no bad experiences, only beautiful memories. We feel at peace.

January 2012

Since Adelaida passed, I have been reflecting. I knew that our “Great Sadness” began when she was diagnosed with NPA over a year ago. What I did not realize was that I have been so sad for so long. When Adelaida died, I became only a little bit more sad. While she was alive, I was having so much fun with her, loving her, and being loved by her that I couldn’t feel sad. We knew since her diagnosis that every minute with her mattered, and we lived every minute that way! It was the hardest and best year of my life!

Goodbye letter to Adelaida from her Mom and Dad

Now, we are surrounded by love from family and friends. The stories of how Adelaida has changed the lives of so many people amaze me. She connected with so many people by looking at them with her big, sparkling, brown eyes, expressing to them that she was exactly where she wanted to be, right there with them. Adelaida Kay was an incredible and brave little girl. She is my hero!

Here is a video of Adelaida talking in her swing!

 

Here are some more pictures from the Van Meter family:

Daddy and sweet baby Adelaida

Mommy and sweet baby Adelaida

4 weeks old

5 1/2 months

10 months

10 months

Mommy and Adelaida 11 months

11 months

Salty peanuts- 11 months

13 months

16 months

Finger painting- Fall 2011

Dinner time! 19 months old

Memorial wall (left)

Memorial wall (right)

Please pray for healing and comfort for the Van Meter family.