Cheryl runs4 Ruby

Let me introduce you to Cheryl. Cheryl joined our BB group last year and during my first time meeting her, I learned that she was a part of a running organization called I Run 4.

Cheryl runs4 Ruby during the Gobbler Grind 1/2 Marathon

Cheryl shares her story here (make sure you have a kleenex nearby):

I Run 4 (www.whoirun4.com) was started several years ago by a man named Timothy Boyle who was inspired by a close friend who was bravely battling bilateral hip dysplasia. After hearing that Tim was planning to head out for a run, his friend said, “You can run for me anytime!”  Tim began dedicating every mile to his friend, Michael, who would never be able to do what Tim was doing.

In the beginning, the group was small.  It was just Tim and some close friends putting miles in for people they knew, but the group has grown and grown and grown.  There are now thousands of runners (or walkers or bikers or swimmers - just any kind of physical activity) in the I Run 4 group with members waiting about 8 months to be matched with a buddy.

I (Cheryl) signed up as a runner on I Run 4 in June of 2014 after reading an article about it in Runner's World magazine.  After 4 long months on the waiting list, I was matched with the sweetest little 3 year old girl named Ruby Elizabeth Webster on 21 OCT 14.  Ruby lives (d) in Craigieburn, Australia (you are matched in the order that you sign up for the program, not location).  Being a mother of 4 boys, I was ecstatic to be matched with an adorable little girl!

Here is a little bit about Ruby (taken from her website, Rubysbutterflykisses.com):

"Ruby Elizabeth is a beautiful 4 year old girl who has a devastating and very rare Neurodegenerative genetic condition called GM1 Gangliosidosis Type 2.  It destroys the brain cells and the spinal cord.

Ruby was born a very perfect chunky 9 pounds 4 on the 11th June 2011 and she just brightened our lives from that day on. Ruby developed as any other child. She was always happy and giggling and always had a smile on her cute little face. Ruby started eating when she was 3 months old and boy did she love her food! She was rolling at 4 months, sitting at 6 months and saying 'Dadadadad' and 'Nananan'.  Ruby started crawling not long after that and then standing up holding the furniture Ruby even took a few steps along the couch.

Ruby’s favourite thing to do was to crawl around to the coffee table and play with the papers on the bottom shelf. Around the age of 1, we (her parents) noticed that the papers that Ruby would play with every day had not moved for a while and that was when we realized that our Ruby had stopped crawling. We had no idea what was going on.

We (her parents) took Ruby to see Doctors and specialists at the Royal Childrens Hospital in Melbourne and they thought she had a condition called Rett syndrome. After that horrible news we were absolutely beside ourselves. As a parent you pick yourself up and say We can do this! We can care for Our Sweet Ruby for ever, Absolutely!!! 

Weeks later the tests come back that Ruby did not have Rett Syndrome. More tests were done and more weeks passed and we got the worst news any parent could ever imagine: Our beautiful daughter has an incurable condition with no treatment and the life expectancy is any time from now to the age of 10. She has GM1 Gangliosidosis Type 2, a devastating disease that robs her of her mental and physical abilities and will take our baby girl from us too soon.

Ruby has lost all her motor skills so she is now completely dependent on us for everything we all take for granted every day. Ruby no longer has the ability to stand, sit, hold her head up, and any movements Ruby does make are not purposeful, Ruby can no longer eat or drink or even control her own saliva so she has to be tube fed. Ruby's ability to smile and laugh is few and far between and this is so devastating.

This condition also causes seizures which she suffers from daily. Ruby's condition has also made her immune system virtually nonexistent and she picks up germs so easily. Because of this she gets pneumonia easily and spends a lot of time in hospital and in ICU because of it. Every time she gets sick she takes longer to recover and requires oxygen."

So what does “being matched” mean?  It means getting out there and doing something I (Cheryl) may not feel like doing today but doing it anyway because I can and because someone is depending on me to do so.  It means support and encouragement.  And most importantly, it means falling in love with a family that you met via the internet and may never get to meet in person.  My buddy and I may have been 9265 miles (14910 km) apart, but we Skyped/chatted so often, it felt like we had known each other for years.  The I Run 4 Facebook group was a place for Ruby and I to communicate with each other.  I wrote messages to her about my runs or workouts (or just to see how she was feeling), always including pictures.  Her mum and dad read her every single post and showed her every single picture.  Even though Ruby couldn’t communicate, they said her eyes would light up and she would smile when hearing/seeing those posts and pictures.  Then, they would reply to the posts as if it was Ruby doing the talking.  

I would read her children's stories (books I read to my own kids when they were little or from a series of books that I had since I was little!) and show her the pictures in the book via Skype.  She would smile and her little eyes would just follow me.  You could tell she enjoyed it every time.  

Her mum, dad and I chatted all the time via Facebook messenger and sometimes, after reading a story to Ruby via Skype, we would find ourselves still chatting about…whatever…an hour later.  It was like we had known each other our entire lives.  I couldn’t have chosen a better buddy/buddy family if I had the opportunity to pick them myself!  However, Ruby’s mum, Jess, always did her best to include Ruby in everything with me.  Ruby slept a lot between being sick and the medicines she had to take because she was sick.  Her mum would use those times she was awake to “help” her with projects.  For example, I sent her a picture of a shoe and every time I would run a 5K, a section of the shoe could be colored in.  Her mum held her little hand and helped her to color that entire shoe in.  

For Christmas, Ruby "made" me a calendar.  Every single page has her foot print or hand print or even her little fingerprint.  Again, Ruby and her mum only worked on the calendar when Ruby was awake so she could be a part of it.  It is just amazing.  

Ruby's condition had declined during the time we had been matched.  She had many hospital stays with pneumonia, and even entered hospice Easter Sunday 2015.  Sometimes she would be asleep days/weeks at a time.  She would be given hours/days to live, but she was such a fighter and got to go home from hospice.

Fast forward to 30 AUG 15.  I attended my usual Sunday morning Weight Watchers meeting.  We had a substitute leader that day.  That week's meeting theme was Being Awesome.  The leader asked what we did in the last week that was awesome.  Given that it was a Weight Watcher meeting, many people responded with food related stories.  I, on the other hand, had an activity related story I wanted to share.  I told the leader that as of that day, I had run every single day for an entire year.  She responded with, "That is awesome!  What is your motivation?"  Having never met this substitute leader before, I told her all about the I Run 4 program and my very special buddy, Ruby (I am very proud of my buddy and will talk about her to anyone who will listen).  She then asked me if I had ever gotten to meet Ruby.  I said that since she lives in Australia and is terminal, I probably wouldn't ever get the chance to meet her in person.

After the WW meeting was over, I was approached by another Weight Watcher member.  She handed me her business card, explaining to me that she was a Community Education Coordinator for a local area hospice and that they had a program that would most likely fund my trip to go meet Ruby.  I couldn't believe it.  I was so excited, but wasn't sure what Ruby's family would say.  I know they wanted to meet me in person just as badly as I wanted to meet them.  However, Ruby's health had been declining drastically, and I was afraid they may tell me that it wasn't a good time.  Instead, the response I got back from Ruby's mum was "OMG, yes!!!  We will pick you up from the airport, you can stay with us, and we have a treadmill!!!"  She was worried that the trip would "stuff" up my running streak.  

Just 4 days later, my flight was booked.  Ruby's mum said they were so excited that they must have told Ruby "Cheryl's coming" 100 times.  They said that her little eyes would look around like she was trying to find me.  People asked what I planned to do while I was in Australia.  My response was always "french braid her hair and read to her in person." Three days after my flight was booked, I was on a plane to Australia.  With the 25 hour flight and the 15 hour time difference, it took me a couple of days to get there.  I arrived on a Tuesday morning, missing Labor Day completely.  

Ruby had gone to sleep the Sunday before I arrived and hadn't woken up.  The first thing they told me when I got to the house was that they were told that she could probably hear so they just talked to her all the time.  And that we did.  We talked.  I read so many stories to her.  I got to hold her once (it was easier for her to breathe if she was flat so she couldn't be picked up very much). 

I braided her hair.  I painted her little nails.  I participated in her music therapy and sang happy monthday to her, as I was there when she celebrated her 51^st.  Ruby was asleep the entire time I was there (except for maybe 60 seconds that she opened one little swollen eye.  She tried so hard.). 

My sweet fighter buddy passed away early the morning of 13 SEPT while I was still there.  It was so hard.  Her family said they thought she was waiting for me.  I have come to believe that myself.  I know how important she was (is) to me and felt in my heart that I was there where I belonged, but was worried if maybe I should step back and let the family have time.  However, I heard over and over again from Ruby's parents, grandparents, great-grandparents, aunts, cousins, friends - "Don't be stupid...You are family." - and that is EXACTLY how I felt.

Twenty four hours later I had to board a plane home.  Ruby's mum cried.  Ruby's dad "jokingly" suggested that I could miss my flight.  I pulled away...numb...feeling that I didn't know how I was going to move forward, leaving this family behind.

We are all dealing with it in our own way.  Ruby’s parents left for a holiday shortly after the funeral and haven’t been able to bring themselves home just yet.  I am glad.  Ruby’s little brother, Tate, has been having a rough time too. 

I will continue to run 4 Ruby.  I have continued my running streak and am still posting to “Angel Ruby” on the I Run 4 site (her mum and I decided on that together).  It was tough getting through my first race knowing that her mum wouldn’t be reading her my post, but I finally convinced myself that Ruby would, for the first time, be able to run with me.

-Cheryl

Being terminal, Ruby's parents knew Ruby would net get many birthdays so they held a big celebration on the 11th of every month in Australia. Ruby celebrated her 51st Birthday in September. On Saturday evening Oct 10 (which will be October 11 in Australia), Cheryl and the Kansas BB's ran a 5K to celebrate Ruby's life on what would have been her 52nd Monthday. The BB's Run4 Ruby.

~ Van