Friday, October 3, 2014

A year.

Sometimes there are no words. I'm finding myself in that place right now. I have no words. My mind is constantly thinking. I'm often unable to make it stop, but I still have no words to say.

Saturday was a year since Wyatt has died. An entire YEAR.

12 months of grieving or 52 weeks.
365 days of remembering or 8,760 hours.
525,600 minutes without him and a whole lot more seconds merely loving him for being him.

Sometimes there are no words. But we do want to take a moment to say, we have sincerely appreciated all the continued love and supportive words that you have extended to us and shared with us throughout this year. If you are ever left wondering, please know, your thoughtful words, comments, your love and prayers are heard, greatly appreciated and do lift us up. Thank you.

We have come to realize that we love to hear you say his name, we speak it everyday in our home. We also love to hear you were thinking about him, it brings us great comfort to know he is remembered. We like to hear the way in which his life has touched yours. It warms our hearts and makes us smile as we are so proud of our son (and brother). Thank you for sharing these things with us. 

The memories of Wyatt's life, our life with Wyatt, replay often in our hearts each day. His life was full. Nearly everything we see or do sparks a memory with him. A full life crammed into 11 years I'm so very thankful for. Though it's hard not to wish it to be longer.

"I carry your heart with me (I carry it in my heart)
I am never without (anywhere I go you go, my dear)"  
- E.E. Cummings

I miss him as much as I love him...and I couldn't love him any more.

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Sunday, September 14, 2014

Mitochondrial Disease Awareness Week -- Sharing his story.

This week is Mitochondrial Disease Awareness Week. For many of you who know our family or have followed my writings here on the blog, you are well aware of Mitochondrial Disease and the effect it has had on our family. We've been a living example of what Mitochondrial Disease is and what it can do.

At the very beginning of June I was given the opportunity to share our family's story, Wyatt's story, and our experience of parenting a child with a rare disease. I thought it might be fitting, in honor of Mitochondrial Disease Awareness Week, to share here what I wrote:

Dear _____________ and ________________:

I remember clearly the day that we found out that the baby I was carrying within me was a boy. I can remember looking to my husband and smiling, “We’re having a boy!” I said. I laid one hand on my belly while Bryan held my other hand and we walked through the hospital parking lot to our car following a prenatal ultrasound. We were both thrilled! I couldn’t wait to watch my children grow up together.

My pregnancy did not go as planned and our son would be delivered pre-term. Wyatt Daniel DeStephano was born on July 23, 2002. His name, Wyatt, was picked because of its meaning, “little warrior.” Our baby came into this world 14 weeks too soon and weighed only 2 pounds, but he was perfect. He was strong with a purpose. I was unable to focus on his delicate, frail body or translucent skin as much as others did. My eyes only saw my beautiful baby boy whom I couldn’t love any more. I was holding his tiny body and talking to him as his fused eye lids opened for the very first time. A moment that not many other parents will get to experience.

Months later Wyatt would go on to graduate from the Neonatal Intensive Care Unit. We were able to take him home, exactly 5 pounds of him. It was such a happy day! We did worry about his breathing as he struggled with both Apnea and Bradycardia. But he came home with a monitor, that he wore continuously, which loudly alerted us to his lack of breath or low heart rate. It helped to ease our fears and be together, at home, as a family. We were led to believe the worst was behind Wyatt, the worst was behind all of us. We could now be together to love and care for him just as we prayed for.

Looking back with the knowledge and experience we now have I can say there were signs that something more, or bigger, was happening within our son’s body. Though, at the time, the doctor’s could easily blame his extreme prematurity for much of what he experienced medically.

However, the fact is, they were wrong. We were wrong. The worst was not be behind us.

As Wyatt grew, his list of medical diagnoses grew right along with him. Test after test was performed to evaluate the function of multiple areas of his body. For years numerous physicians studied lab values and ordered additional tests, but Wyatt and his medical troubles never fit into any underlying diagnosis fully. That is, none that his highly trained physicians could find. We were left to treat his symptoms to the best of our ability, one by one. There was always doubt and fear that lingered as we didn’t know exactly what was happening inside of Wyatt. At times it felt much like there was a ticking time bomb within him, but we didn’t know how long until time would run out and his body would come crashing down, piece by piece. The weight of not knowing why this was happening to our child and what was causing it was heavy and overwhelming. 

With his doctor’s guidance, we traveled the country in search of answers for our child’s declining health. It wasn’t until we reached a physician many states away, who lent the majority of his time to research, that we would get a diagnosis that “fit” for our son. The results of both a muscle and skin biopsy told us that Wyatt had Mitochondrial Disease. His body was failing due to a lack of cellular energy.

Mitochondrial disease is a progressive, degenerative disease for which there is currently no cure. The only treatment available to us was questionable and inconsistent among the patient population. The treatment is merely a combination, a “cocktail”, of vitamins that have the potential to help some patients with Mitochondrial disease feel better. However, by the time Wyatt received his diagnosis, the diagnosis that we spent many years in search of, he was already in intestinal failure and would not regain use of his gastrointestinal tract again. This potential “treatment” requires a functioning intestinal system, which made it unusable for Wyatt. At the time of diagnosis Wyatt required 24 hour IV nutrition and medications. He had bags which extended from tubes within his belly to decompress his intestines and relieve the pain and pressure from a failing system. It wouldn’t be long before his body fought chronic and life threatening infections through his blood stream from bacteria that would trans-locate from the failing intestinal system inside him. Each of his organ systems took hit after hit. With each impact to his body he struggled to return to baseline, leaving his health declining with every stressor.

Wyatt was like any other boy despite the complexities and severity of his health. He loved amusement parks, roller coasters and the magic of Disney World. He was the “middle man” of two sisters who he loved dearly. He was involved in Cub scouts and had the opportunity to play little league baseball, which he fell in love with. Wyatt knew his body was failing him. He was aware that he was physically dying and was able to help us make his own end of life decisions.

Imagine, at only 10 years old, knowing you were going to die because the doctors could no longer help you; because they didn’t know how to help you anymore.

Wyatt wanted to be comfortable enough to enjoy the rest of his life, to do things that he loved with his sisters, family and friends. He didn't want to be in the hospital. We worked closely with his doctors to make him as comfortable as possible to give him the time he needed before he was ready to go.

As I sit here now, I am remembering fondly the time we found out that we were having a baby boy, when he was born and as he grew during his infancy. What I thought would be the scariest time in our life and that I was relieved to put behind us, is actually now memories that we cherish. During that time it was unknown to us that my husband and I would later have to bury our dear child, our baby boy. That we would have to talk to him about his death, explain to him what it may feel like, assuring him that we would love him forever and he would always be remembered. I had no idea what it would feel like, as a Mother, to watch helplessly as my son’s organs failed one by one.

Wyatt died on September 27, 2013 after fighting for as long as he could while he still desperately held on to hope for a cure in his lifetime. It was exactly eleven years after we brought our five pound baby boy home from the Neonatal Intensive Care Unit that we would watch him die in our home, surrounded by family and friends who loved him dearly.

Mitochondrial disease is the rare disease that took our son’s life. A disease that even the most astute and educated physicians know little, or even nothing, about. There needs to be more funding for research. There needs to be strides forward in educating and learning about these rare diseases that are shortening our children's lives. I want so badly to help another family avoid the devastation of watching their child die; the helplessness that comes with making your child comfortable from the pain of organ failure, knowing they will soon take their last breaths. The heart wrenching pain of watching their child’s siblings say goodbye as their brother’s heart stops beating. These children deserve so much better! They deserve to live happy and longer lives just as much as you and I.

I can’t express to you how frustrating and defeating it felt to not be able to help our child. To realize the physicians who we sought out and were known as the best in their field didn’t know how to further help our son. To make the heartbreaking end of life care decisions and, furthermore, funeral arrangements for our 11 year old boy. There are no words to accurately portray the deep, unrelenting pain that losing a child has left us with. I often stand over our son’s grave and remember his smile, his laugh, his sense of humor and kind heart. At the same time as I long to hear his voice, to hold him in my arms again or to kiss his cheek.

I’m writing you today to ask for your help. We need your help — children need your help! Simply providing more funding to the NIH for pediatric research, including funding for rare diseases, would be a start. There is much more that we need to know to work towards a cure for pediatric rare diseases, many of which are fatal. Our doctors are doing the best they can with existing information, but it’s simply not enough. We need to do better for our children and their families.

I share our family’s story with you today to make aware the impact that rare diseases can have on families. I’m asking that Congress also work with the NIH to implement the National Pediatric Research Network Act. Any additional structure and funding that could help research institutes collaborate would be a step in the right direction.

While a cure was not to be for Wyatt, I believe there could be further advancements in treatment and ultimately a cure, not only for Mitochondrial Diseases, but for many other rare diseases, as well. But without your support and funding to further pediatric rare disease research there will be other children whose lives will be drastically cut short, leaving behind families who will face the pain of losing their child. Please raise the profile of this issue through hearings, forums and in-district visits with researchers and families. We would like for you to hear our stories. By working closely together, we can chart a path forward to find cures for our children so they have the opportunity to have what we wish for them – long, happy and healthy lives.

If not you, then who? Who will be the one to make a change for these children and families affected by pediatric rare diseases? Who will be the one to provide funding for further research and resources for physicians? Who will take the step to give hope to the children who are fighting to live another week, another day or another hour with only the hope for a cure?

We need to help the families who are living with pediatric rare diseases. The children living with a rare disease, like Wyatt, are counting on you! They are counting on further research of these rare diseases so they too can live a long life, just like you and me.

We sincerely thank you for the opportunity to share our family's story —
Ashley and Bryan DeStephano
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Wednesday, September 10, 2014

We're still here.

It's been sometime since I've written here. For those who follow us on Instagram or even Facebook, you've had the chance to see a little more of what's been going on for our family this Summer through pictures and captions that we shared. It was a busy Summer -- we've been busy redefining our life as a family. It certainly takes time. But we're now back to early rising, after school sports practices and activities and nightly homework before an early bedtime. August came and went and we're staring down the month of September. Beginning a new school year and the current month has hit us quite hard -- as if I ran into a concrete wall.

A year ago our life looked drastically different. Our life felt drastically different. While heartbreaking in its ways, it felt much more complete. Whole. At that time we were unable to ever imagine or feel the way that we would in a few weeks time to now.

I've been reliving much of last year through memories everyday. It's hard not to. The dates on a calendar hold such significant emotions...especially right now, this month. While the decisions we were making for Wyatt were difficult a year ago, it feels even harder to relive it all through our memories: we now miss him so much more. Last September I was memorizing each moment -- each smile, laugh, moan and squeeze of his hand. Every day that he was still breathing. Every hair on his head, each wrinkle and crease of his skin and every fleck of color in his eyes. Now, this September, we miss every little thing about him, all those things I memorized and more. So deeply. 

Life keeps going and going and going. And we have learned to do much the same -- to just keep going. We've continued to celebrate and share Wyatt's life in various ways through the Summer months. Telling his story and sharing his life with our community has meant a great deal to each of us. Most recently, Maggie volunteered to share his story with the crowd during an event that we were a part of, "Stick it to Mito". It was not easy for her, but the speech she wrote and the way in which she spoke of her Brother was purposeful and with grace. I bet he was so proud of her. I know we are. Just as his friend, Emily, said as she introduced our family -- I'm sure he was smiling down on us all.

I have no doubt that I will continue to grieve the loss of my boy for the rest of my life. We grieve because we love and that love will never change. But I do feel there can be an amount of healing in the midst of grieving. It's much like a dance, a delicate balance or an intricate equation. Sometimes it doesn't make sense, but that's okay. It doesn't have to. Life keeps going and so have we: one day at a time we continue living our lives -- with him, for him and because of him.
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Sunday, June 29, 2014

The ugly truth.

I can't seem to find the words to write here of late. I've tried multiple times. There is so much I want to say, could say and even need to say, but, truly, all of it originates from the same place....I miss my boy.

I want my baby back. 

Nine months ago I held his swollen hands. I kissed his cheeks and forehead. I ran my fingers through his hair. My tears fell on his face.

There are times he feels so close, yet so far away.

We miss him so very much. More and deeper than words could ever explain.

I want to be that quintessential family, the parents with their three children just living life as it comes. You know, the family we were 'supposed to be'.

I'm tired -- of being that family. The family whose child is sick, the family whose child died, the family who is grieving, the family that the awkward silence seems to follow. The family left trying to redefine what their life will look like, yet again.

What you want is not always what you get...that's a life lesson that we all learn at one point or another. We've taught our children how to make the best of a bad situation and that there is always something to be thankful for.

But, if I'm going to tell you the truth, right now I want to yell. I want to scream. I want my boy back.

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Friday, June 20, 2014

More information. (Please read!)

Bryan and I would like to take the time to answer a few questions that we've been asked within the last few weeks and that you may be thinking about yourself. 

Why are you hosting this event?

Well, we think the main purpose is pretty simple. We want to continue celebrating Wyatt's life and help to carry on his legacy. We don't want to stop celebrating his 11 years. Our son may have died, though he is still very much a part of our lives each and every day. We've come to notice that can be difficult for some to understand. I can say with confidence, July will never pass by without us celebrating him and his birthday in some way.

By hosting this event we are inviting you to celebrate, remember and honor Wyatt with us as he celebrates his first birthday in Heaven.

Why do you choose to raise money for the UMDF?

Mitochondrial Disease is a progressive disease that has no cure. A disease that can cause body systems to fail due to a lack of cellular energy -- the brain, heart, liver, skeletal muscles, gastrointestinal and respiratory systems can be some of the most impacted. Each of Wyatt's body systems began to deteriorate as the disease progressed within him, until his body was severely impacted and he died of multi-system organ failure. Mitochondrial disease took our son's life and has changed our family's forever. There needs to be better treatments available and, we hope, a cure. While there may not have been treatments or a cure in Wyatt's lifetime, we still believe it to be possible for another individual, another family, who is waiting and hoping. As we celebrate the life Wyatt lived, we hope you will help us in our mission to help other families living with Mitochondrial Disease. A treatment option or cure for Mitochondrial disease would change a family's life, but this time it would be for the good. So, maybe one day they won't have to say goodbye too soon.

Why did you decide on a virtual race?

We chose a virtual race because it has the ability to include anyone from anywhere. When we were thinking of dates to plan a 5k or something similar we were running into conflicting schedules. I also was feeling a little overwhelmed at the thought of planning an event in a limited amount of time. A virtual charity race seemed to solve both problems in this case. Those who we love and those who love Wyatt from all over can join us in celebrating his life and I have the hope of having fun with it myself.

We look forward to seeing pictures of those who are celebrating and participating with us!

What do I need to do to participate?

1. Decide on the distance you hope to complete through the month of July. You have the choice of 1 mile, 5k (3.1 miles), 10k (6.1 miles) or a half marathon (13.1 miles). Keep in mind, you can complete your distance all at one time or you can work on it throughout the month...that's up to you.

2. When you decide on the distance you wish to complete you can visit the following link to formally register --

Registration is easy and secure...we made sure of it. No need to worry.

3. Once you complete the registration process you will be ready to start running, walking or rolling on July 1st. We will not be checking times or distances...this is all based on the honor system. AND by the pictures that we really hope you will be sharing with us during your run, walk or roll...we look forward to seeing pictures of your smiling faces! (You can post your pictures on the facebook page, tag us in the picture via facebook or instagram and/or email them to us at --

A quick tip: There are apps available for smartphones that can help you in keeping track of your distances -- Nike+, map my run and run keeper are a few that we have used with success. Map my run and run keeper apps are free...we don't recall if Nike + was also free or if it had a small charge.

Things you might like to know...

1. For those that have already registered and will be participating, we will begin mailing "race packets" tomorrow morning. The race packet will include a race bib that you have the option of wearing during your chosen distance and a few small extras.

 (The race bib...)

2. A finisher's medal will be awarded to each participant who has registered. We will be mailing them following the course of the event (at the end of July).

(The medal...)

How can I help?

1. Talk about it! Tell your family and friends about the charity event. Share with them what you know about Mitochondrial Disease and how they can help.

2. You could also go like the Facebook page and maybe even share it with your friends.

3. You can choose to share any of these links via social media websites or email., or

4. Register and join us.

5. Better yet, rally a few friends to register with you. Completing it together will be fun!

Throughout the last few years a lot of people have always told us if we ever needed anything to just ask. We didn't always feel comfortable asking for help, in any form. But we are asking for your help now. It would mean a great deal to the four of us to feel the support of our friends and family at this time. In creating this event we hoped to honor Wyatt's birthday, while also raising money to further support the research and hope for better treatments, or maybe even a cure, for Mitochondrial disease. We would truly love for nothing more than to help another family avoid the pain that comes with losing a child.

Why is this important to you?

Bryan and I said from the start, if we were to "host" any event at all, it must be ALL inclusive. Meaning anyone of ANY ability could participate. Wyatt (as well as Bryan and I) loved and took notice when people made an effort to make a place or event accessible to all ranges of abilities. We still take notice because it always meant so much to us. We want to encourage anyone and everyone to participate with us.

Whether you are running fast, slow, inside or outside, on a track, trail or treadmill. You can be walking or crawling, rolling in a wheelchair, on a bike, roller skates, skate board or even down a grassy hill. It's absolutely permitted to skip, jump, dance or boogy your way through the distance. We just hope you will be moving forward and having fun with it.

Wyatt had an incredible ability to have or create fun and appreciate each day that he was alive. At 11 years old he knew how to celebrate celebrate his life, even while his body was physically failing him. Each day is a gift, a privilege that is often overlooked through the stress, responsibilities and schedules we keep. We want this event, Run, Walk or Roll with Wyatt, to give you time to let go of stress and worry. Time you can choose to spend with family, friends or even alone. Time to enjoy -- to relax, to smile, to laugh. It can be a time to simply celebrate life.

We sincerely hope to have you joining us.

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