Friday, April 11, 2014
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:
Check out this year's Silent Auction items:
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!
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 ♥
Friday, February 21, 2014
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.
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.
Wednesday, January 1, 2014
Thursday, September 5, 2013
Saturday, July 9, 2011
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! ♥
Tuesday, June 21, 2011
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. ♥
Tuesday, June 7, 2011
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!