"Alone we are rare, together we are strong" - Boston Strong!!

In 10 days, thousands of runners from all over the world will come together in one of the most famous cities in North America to run in the Boston Marathon.  This year, people from around the world have been encouraged to participate in their own home towns, because as we come together and form a unity of peace - the embrace is forever strong!  For the past 8 years, an amazing friend has been running in the Boston Marathon.  Phil Maderia's amazing strength and determination will carry him through each mile as he runs to raise money for rare diseases and in memory of our Mylee Grace and Wylder James.

We are honored by this amazing opportunity as he continues to share Mylee's story to raise awareness for Mitochondrial disease and other rare disorders through his efforts as a marathoner, ultra marathoner, and Ironman triathlete passionate for rare disease awareness!  Phil is the director of engineering at Genzyme and the founder of RunningForRareDiseases.  This year, he has put a team of 30 athletes, representing 21 rare diseases together to run in the Boston Marathon.  Together they form an amazing team raising money and awareness for this very special program!

Please help Phil and his team as they carry with them the amazing spirits and strengths from patients they will represent at the Boston Marathon.  Here is Phil's fundraising page for general donations:

http://www.razoo.com/story/2014-Boston-Marathon-Team-Phillip-Maderia

Check out this year's Silent Auction items:

http://auction.runningforrarediseases.org/

Phil also has a music playlist fundraiser, send him your favorite song and he will add it to his playlist as he runs the course!


https://www.firstgiving.com/fundraiser/phillipmaderia/bostonmarathon-1



Your support is greatly appreciated and to know our princess lives on in so many people is an amazing feeling.  With brave wings she flies... Thank you Phil for honoring our princess and our friend Wylder.  Just as you carry them both in your heart today and on race day -- you will forever be our champion who wins the race!


                 Forever Mylee's mommy ♥

Who is your Hero?

Do you remember being in school or a young child and someone asking you, "Who is your hero?"  A Hero is typically defined as a person who is admired or idealized for courage, outstanding achievements, or noble qualities.  Our family has encountered many people who have gone above and beyond in our eyes and be defined as courageous, who stands out in the crowd giving to others, and doing selfless acts to promote, advocate and help amazing causes in their communities.

This is one hero we are so thankful to also call our friend.  In 58 days, Phil Maderia and his Genzyme running team of 30 runners will be running in the Boston Marathon for rare diseases.  They are dedicated to making an impact on the lives of people fighting these incredible battles of diseases without treatment options or cures.

"Alone we are rare, together we are strong"

We are hopeful to be Boston bound to cheer on our hero who will be running in memory of Mylee and another dear little one (Wylder) who together are holding hands in heaven.

Please help support Phil's efforts at bringing awareness to raise diseases around the nation and world.  Each step he takes as he runs 26.2 miles is an effort on his part for this amazing cause.  Next week, on February 28th, the world will observe this day to raise awareness about rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.


For Phil and his team and in memory of Mylee and Wylder and children like them who have fought or continue to fight rare diseases, please donate $26.20 on February 28th!  2014 Running for Rare Diseases Marathon Team.

Thank you Phil!  And thank you to your team of runners who together will run strong!  Our heroes, our friends!!

A Runner's Prayer

Run by my side, Lord - 

Live in my heartbeat. 

Give strength to my steps, 

As the cold whirls around me, 

As the wind pushes me, I know you surround me. 

As the sun warms me, 

As the rain cleanses me, I know you are touching me. 

Challenging me, loving me. 

- And so I give you this run.  

Thank you, God, 

for matching my stride. 

Amen

In her memory...

Our day today, the first day of the year 2014 is now coming to a close.  Dave has just finished his run for the day and he is feeling great!  We are less than 3 weeks now until Arizona's PF Chang Rock N Roll Marathon.  We are excited for TGen's Rare Childhood Disorders to be an official charity this year!  Team Mylee's Marathoners continues to train hard and fundraise with so much enthusiasm!!  We are so proud and excited for this fun event!!

Please welcome our new friend, Phil Maderia who has organized Genzyme Marathon Team to qualify and run in the Boston Marathon is coming to Phoenix to run in the PF Chang Rock N Roll Marathon!  He has asked to run in memory of Mylee in the 2014 Boston Marathon!!  We are excited to meet this amazing person who has created this awesome team of dedicated athletes who are making a major positive impact on the lives of people with serious diseases and illnesses.  This amazing team has teamed up with the National Organization For Rare Disorders to run for rare diseases. 

 

We are so grateful for those who continue to keep the memory of Mylee alive.  It is so important to us to continue to bring awareness to our communities about rare childhood disorders, so that one day, better treatments come available and those with diseases that have no cure can be found!  

For more information on how you can help support these amazing runners, please visit Mylee's Marathoners  or Running for Rare Diseases.

                                            

                              "Never Give Up..."

We continue to breath.... to live without our princess.

Our lives seemed so "normal".  It was anything but normal, but to us it was imperfect perfection.  At 6:03am on June 21st, 2012 - our lives stopped in an instant.  I had just finished rubbing lavender scented lotion on the bottoms of her tiny feet.  I will never forget the smell, the touch of her tiny fingers.  Brushing my teeth so early in the morning will always be a reminder of her final breaths.  My brother gently spoke to me, telling me I needed to come back to her bed.  "It was time."  Our family was close, but scattered throughout the "house".  It was just before 6 and I crawled back up onto her bed.  I spoke in whispers to her, I held her legs and caressed her feet.  Everyone gathered.  The sounds of the ocean crashing onto the shore from her noise maker seemed to soften, the only sounds I heard was my sweet little princess taking her last breath.  My head was spinning, life ended.  Or has it just begun?

Life over the past sixteen and half months has been mostly in a fog.  Moments of clarity are few and far between.  However, we continue to live.  Our continuous heartache is a painful reminder of the fight she so courageously fought.  A piece of her baton passed on to each of us as we continue her fight against rare childhood disorders and our hope of victory against Mitochondrial disease.  

Our own lives moving forward will never be easy.  We will always grieve the loss of our princess.  We will never be the same.  Our lives will never be "normal"... but Mylee's spirit continues to light our way.  Through her research fund at TGen foundation, we are hopeful of new and upcoming treatment options for children like Mylee who courageously fight each day.  For more information about TGen and Mylee's research fund, please visit www.tgenfoundation.org or make a donation directly to Mylee's research fund, www.myleesfund.org.

Never Give Up, 

Sara

Random thoughts...

I have sat down many times in the past few weeks to update this blog and ended up having to put it away because my head was full of fog, much like it is at the moment but I decided to just start writing and I would re-read to see what I came up with before posting the written thoughts.

So here it is already midway through the summer and our Atlanta trip is now 1 day away. We leave very early on Monday morning. Mylee's appointment with Dr. K is on Wednesday. I am hopeful we have a smooth flight with our two little ones. So much has been going on it is sometimes difficult to figure out how to organize my thoughts let along all the medical information that seems to now be a daily task. Here are just a few items on the list of discussion points:

• Seizures activity and unusual episodes



• Extreme Fatiguing



• Increase in Behaviors



• CO2 Rentention



• IVIG therapy



• new brain changes; lesions, atrophy

Could these all the be the result of one major issue, like a seizure disorder or the result from the lack of wearing her Bi-PAP machine because of central sleep apnea. All results of a bigger picture which is progression of this ugly disease. We are hopeful we will get answers and perhaps helpful instructions as to how we better handle each day with Mylee. Our greatest goal and outlook for Mylee is to be able to have the best quality at life for her.

We have many procedures and upcoming appointments when we return from Atlanta too. Mylee is scheduled for a video EEG the first week in August. Our local children's hospital has just expanded and with the new improved wing to hospital more technology has been made available to children in our local area. We recently ran into some problems with having a procedure done here in Arizona and thought we would need to have a VER/ERG (retinal degeneration study) done in southern California. However, our local hospital is going to start doing these. We are in a holding pattern until this can be scheduled. Mylee will also pick out a manual wheelchair at the wheel-chair clinic the end of July.

It is too hot here in Arizona to play outside. I have become creative with ideas for the two girls to pass our time during these hot days. And I am thankful most days are consumed with therapies and appointments. In our downtime though we have had rock concerts, painted with passion and mastered our somersaults

School will be starting soon for the girls and we look forward to new chapters starting in each of their lives as they start a new school year.

As we continue in our journey, another little journey has ended. We are saddened by the passing of little princess Eithene. She graciously earned her angel wings yesterday morning. She fought an amazing battle. She will forever remain in our hearts. Mitochondrial disease awareness and the fight to find a cure has become a mission in my life. I ask you to join my mission and help bring a cure to this disease! ♥

xoxo

Finding a happy balance ♥

Realities really seem to be a struggle lately and even writing those first few words really aren't accurate because the struggles have been on going for almost a year! It must be due to her outgrowing the baby years and into a child. Why am I having such a hard time with the reality of having a child with disabilities?! Is it my faith that I believe a miracle could happen? Is it the HOPE that one day she could be healed on this earth? Bottom line is that my child is disabled and cognitively severely delayed!! I need to find a happy balance not only for me, but for my family. It seems like I must have posted something similar to this in the recent past. Maybe it is because I feel like I am waking up on groundhog day everyday, same routines with the same appointments, week after week after week. Ugh, okay off my soapbox now...

We are gearing up for our Atlanta trip to our appointment with Mylee's geneticist. We still have a lot to prepare for. It is difficult traveling with someone who has more equipment and other items than most. For instance, we need to pack a single tent to enclose Mylee in at night since she is too big for a pack n play crib yet we need to keep her confined to a small space due to her being a fall risk. It really gives new meaning to packing everything including the kitchen sink! I will need to touch base with her geneticist office to make sure they have all new records from out last local admission and to find out if they have received her results from the spinal tap. Unfortunately, we will not have the results from a scheduled ERG/VER that we were hoping to have completed before our trip.

We had a little snag in our attempt to have a procedure done in a local hospital that we are not too familiar with. Currently, only one hospital in Arizona conducts this procedure for pediatric patients. An active investigation is being conducted on the technician who seemed to be under the influence of something. We stopped the procedure not only due to this unfortunate circumstance but because Mylee was also being very uncooperative and somewhat combative. We thought we were going to be transported to UCLA to have the procedure done under sedation, however our local Children's hospital will be able to conduct the procedure later in the summer. Mylee will also be scheduled for another VEEG. We are checking to see if she is having seizures. Mylee's disease seems to have progressed since her last MRI showing both continued progression of atrophy in her cerebellum and now delayed mylination in the cerebral hemispheres. This makes her more susceptible of having seizures. We are anxious to discuss these findings as well with her geneticist to see if she could help us better understand what is happening with Mylee.

Finding a happy balance in everyday life is difficult, finding a happy balance in our life is almost impossible! I have a child who wants to walk, who wants to eat, who tries to keep up with her little sister but struggles in every way, shape and form. It honestly is heartbreaking! So we do what we can and make the best of every situation. Mylee has been working on power chair training for about 3 months now and we have to the conclusion that we need to hold off with continuing training with her chair. We will discuss getting a manual chair for Mylee and use the manual chair for her independence. And hopefully in a year or two we can try again with the power chair. We have seen a lot of neurological changes in Mylee and we will remain HOPEful that she can overcome these obstacles that continue to be thrown in her direction. ♥


xoxo

Differences yet the SAME!! ♥

I am always trying to remain positive because I have come to realize that if I put myself into the situation where I am constantly depressed and always looking at the cup that is half empty, well then I couldn't quite possibly be the best mommy I have promised to be to my two wonderful little princesses!! ♥

This year especially has been the most trying; Mylee is 4 (almost 5) and Khloe is 2 1/2 going on 15! I say the most difficult because it is the reality that Mylee has disabilities and it will constantly be a struggle to know that she may never be able to do the things every little girl experiences!! For her it seems to be a norm, I and even WE I think struggle with this daily!

The differences are clear cut; physically Mylee can not ambulate on her own! That means no dancing freely, no swimming on her own, not even doing the most simple things like walking or using the restroom on her own. And down the road; no bathing on her own, brushing her teeth on her own, or even playing on her own because of risks to falling, choking on objects she may place into her mouth, or the fact that she can't communicate with words and therefore someone would need to be with her at all times to meet her needs!


And yet we still honestly experience the SAME emotions HE has intended for us to have. The emotion of LOVE for one another and compassion when someone needs and extra cuddle or hug. The emotion of happiness and free spirit when I watch the girls play together, even when Khloe is happily giving her sister a helping hand. The joy of dancing together with music, even if Mylee has to use a piece of furniture to prop herself up. The joy in her face and the happiness I see from both girls is priceless. I have even been able to see recently the two of them playfully wrestling with one another on the floor; sometimes it gets a little rough and usually one ends up crying, but overall the friendship I see between the two of them is becoming stronger and stronger. ♥

I know we will always see Differences in our journey but I am confident the bond we continue to mold strong and firm will keep our family protected and our continued faith unbroken!

xoxo