When you get pregnant, you can’t help but daydream… you dream about holding your baby and singing her to sleep. You dream about dressing him up in cute clothes and sending him off to school. You dream about high school dances, colleges, weddings and grandchildren. What you are terrified about, from day one – literally the minute you find out you are pregnant – is that something could go wrong.
When Laurie’s baby girl, Ashton, was born, the doctors knew right away something was wrong. Despite having perfectly normal prenatal exams and ultrasounds, just after birth, Ashton was swept away for tests and found to have an enlarged liver and spleen. It took nine months for her doctors to reach a diagnosis. Ashton has Niemann-Pick Type C Disease. There are only 500 known cases of this disease worldwide.
I met Laurie in the 8th grade. We were in the same homeroom, but I don’t think anyone in our homeroom knew one another when the school year started. For the first couple of weeks of school, we would all sit quietly at our own desks watching the clock tick away and occasionally whispering to the person beside us while waiting for the first period bell to sound. Our homeroom teacher used to chuckle at us because we were so very quiet. Laurie was also in chorus with me, but I can’t remember if that is how we truly met, and perhaps the absense of that exact memory I owe to her personality. Laurie is one of those people with whom you automatically feel like you’ve been friends forever even if you just met five minutes ago. She radiates kindness and joy. A few weeks into school, I remember picking up my stool (our homeroom was in a chemistry lab) in the middle of our ultra-quiet homeroom, and taking it back three rows and over one table to sit it down beside Laurie. After being watched by the entire class, others quickly decided to follow suit and moved their stools beside their friend of choice as well, and our homeroom thenceforth became a boisterous cacophony of fun.
Laurie and I were friends all throughout high school. There were sleepovers and birthday parties and confessions of crushes on this boy or that one, but as friends sometimes do, we lost touch when we went to our separate colleges. About 8 or so years ago, one of my friends told me about Laurie’s daughter Ashton. I remember feeling so sad and wondering what I could do to help.
Laurie and I reconnected through Facebook a few years ago, and I started following Ashton’s progress. Laurie keeps a really great care page for her, which everyone is welcome to follow. I read her updates for a couple of years, wondering still what I could do to help.
Eight months ago in February 2013, I stumbled across Ashton’s Facebook page and saw that only one of our mutual friends had done the same. I just don’t think anyone knew to look for it! On the Facebook page, I saw that Ashton was having a fundraiser picnic in May, and I finally had an idea on how I could help! I would go back down to my hometown to photograph their family and share, share, share to try to get some more people at the event. Laurie was as excited as I was! We set March 9th as the date for her session… but Ashton’s health deteriorated. We rescheduled for March 17th, but there was no improvement. The next date we tried was April 26th, but again, Ashton was not healthy enough to meet.
You see, Niemann-Pick Type C (NPC) is a progressive neurological disorder which causes deterioration of the nervous system. Some of the symptoms include low muscle tone, slurred speech, difficulty swallowing, respiratory issues, and delayed development. NPC is ultimately fatal, and there is no cure. Most children do not live past adolescence. The symptoms are actually very similar to Alzheimer’s Disease. Ashton has suffered quite a bit from seizures, which began in earnest about a year ago. When we were trying to meet up in the spring, she was averaging a seizure every thirty minutes.
Despite not being able to photograph Ashton this spring, I did get the word out to our friends to increase the number of followers and supporters of Ashton and her family (yay!). I brought my family to Ashton’s “Pinknic” in May, where I was able to take some candid photos of her and her family. It was really fun even though I didn’t win any of the dozens of amazing prizes at the silent auction (will try again next year!).
There was another failed attempt at scheduling a photo session for July, but FINALLY, Ashton’s health and my schedule clicked, and we were able to do her session two weeks ago! Ashton’s doctors seem to have found a pretty good combination of meds that have reduced the number of seizures she has to only one or two a day.
Interspersed with the photos from her session below are quotes from Laurie about Ashton. Scroll to the bottom to find some easy and FREE ways to help Ashton and her family.
“On a normal day, we wake her around 6:30 so that she can get breakfast and start her medications. (She takes so many throughout the day!) By the time breakfast is over, she’s usually always falling asleep in her wheelchair. We put her right back in bed, and she sleeps until around 11:00. When she wakes up, I take her to school, and she usually makes it until the end of the day! She loves seeing her teachers and friends, and enjoys riding the bus home! By the time she gets home, she’s usually falling asleep in her wheelchair again! She sleeps until dinner and is back in bed for the night by 7:00PM. She’s up every couple of hours throughout the night because of her seizures or respiratory issues, so Chris and I get very little sleep!” – Laurie
Thirty minutes before I arrived for Ashton’s photo session, she had a seizure, which makes her very tired. Luckily, we quickly learned that mentioning her friend Tyrae’s name would perk her right up!
Tyrae has Autism and was friends with Ashton in elementary school. However, he’s a year older and went off to middle school a year ago. This year, when Ashton was heading to her class on the first day of school, Tyrae saw her from afar, shouted her name, and ran over to give her a hug, much to the astonishment of his teachers. Ashton is that amazing!
Ashton loves all things pink! Her room is pink princess central! I love it!!! On the day she had to go get a walker several years ago, she was elated to find that she was able to choose a pink one. “It comes in pink!,” she shouted. Talk about turning lemons into lemonade!
“The scariest part of the the whole experience has been watching the progression of the illness. Chris & I know that our time with her may be limited, but watching her decline is hard. This year, in particular, has been really difficult on her. She’s lost so many skills so quickly. Before her seizures started last October, she was walking with the use of her walker, speaking much more clearly, and eating on her own. Now, she’s confined to a wheelchair, rarely speaking more than a couple of slurred words at a time, and using a feeding tube. She’s also so tired from her seizures that she sleeps most of the time, which is hard because she’s very social, and I know she’d like to be out enjoying life!” – Laurie
“In the midst of all the craziness, the best part of the experience is just being able to spend each day with Ashton! She’s such a cool kid! She’s always happy and smiling, and she never complains about anything! When she was an infant, we were told that she likely wouldn’t live long enough to even go to kindergarten…The fact that she’s now in middle school is amazing! We’ve learned to celebrate the small things in life and not worry about the future. We know that God has a plan for Ashton’s life, regardless of how many years she’s here with us!” – Laurie
Thankfully, there is a research foundation catered specifically to Ashton’s illness, the Ara Parseghian Medical Research Foundation. If the name Ara Parseghian sounds familiar, it’s because he is a former Notre Dame football coach (from 1964-75) , but he also lost three of his grandchildren to NPC, all at a young age. The research foundation’s mission is to expedite treatment for NPC and to also support research for NPC and other similar illnesses. 90% of every dollar contributed to the foundation goes directly to medical research.
Here are some really simple things you can do to help!
1. Like Ashton’s Facebook page – It Comes in Pink.
3. Sign up to receive Ashton’s CarePage update to follow her progress.
4. Pin and share this blog post. (Click the relevant buttons at the bottom of this blog).
5. Consider making a donation in Ashton’s honor to the Ara Parseghian Research Foundation.
6. Attend or donate to next year’s Pinknic! More information will be available here in the next few months: http://www.itcomesinpink.org.
7. Leave a comment below for Ashton! I know her mom will be reading them all and sharing them with her!
October is Niemann-Pick Awareness month, and in honor of that, I will be donating $30 for every session I book this month to the research foundation! I’ll add an update at the end of the month to let you know how much the final total was
I’m doing this for Laurie. Because I saw my daughter have a seizure once (only once!), and it was the most terrifying moment of my life. Because I remember being so relieved to know my children were born healthy, and I can’t imagine having them swept away from me in the delivery room to run tests. Because if my child had a very rare and fatal genetic disorder, I would probably feel alone, scared, and that noone really understands what I’m going through, but Laurie… Laurie still smiles, laughs and lights up the room. Laurie has the most amazing positive attitude and faith. Laurie is an inspiration to me, and I hope she is an inspiration to you.
UPDATE: I’m so excited about the $360 donation I just sent to the Ara Parseghian Research Foundation! Looking forward to each of the 12 sessions I scheduled in October! Thanks so much to everyone for your support of Ashton and Laurie. Laurie and I exchanged messages full of tears and wonder by the amount of support they have received from all of you!!! :~)