Monday, October 17, 2011

Energy For Life Walk 9-10-11

This was such a great event to be a part of and I am so glad we found out about it in time!
It was at Murray Park in Murray on Sept 10, 2011!  It was so good to be there and meet some new
people and read the stories of the other children in our community! They had several stories of children along the course who are dealing with a Mitochondrial Disease and then children who lives were taken by it.  It was so heartbreaking to see these sweet children.  It made me realize that there are others who  are facing the same challenges as my sweet Ramsi, and some who are facing much harder things too.

The money that was raised (about 18,000) went straight to UMDF (United Mitochondrial Disease Foundation)
and that will go towards finding a cure!  I can't wait to help out with it next year to help raise more awareness!

Here are a few pictures from the "Rockin" with Ramsi" team! Thanks to everyone who donated on behalf of our team and for those who showed up and walked with us!!!!

Ramsi turns FIVE

I know her Birthday was over a month ago, but I thought some cute and fun pictures should be shown to celebrate her!!! We love this little girl more than you can imagine! She is such a sweet girl who is full of life and wants to be busy all the time! She will try and try to do something and ask and ask until we let her! She is amazing in every way and she just keeps on improving and we couldn't ask for more in a daughter!

I picked her up from school and took her to the Zoo with her sister and Grandma HIllesheim! That wore her out and she fell asleep immediately in the car!  Then we had a family party for her later that night and she loved it!

                                 Picked her up from school to go to the Zoo.
                                                   Loving the merry-go-round!!
                                                                        So Cute!
                                                                   passed out!!

Wednesday, September 14, 2011

Our 1st Annual Benefit Dinner and Silent Auction

Grandma and Grandpa Stoney
We are so thrilled with how our very first fundraising event turned out. We had so much support from family, friends, and others who gave of their time to help us out that evening. There was an amazing dinner, an educational documentary, a speaker, and lots of fun auction items to bid on.

Joseph and Shandie Andrews

Grandma and Grandpa Hillesheim

Dr. Ashely Warnock

Wendy Burkman, Angie Larsen ABC 4, Diana Reed, Natalie Walden
We were privileged to have Dr. Ashley Warnock, a geneticist up a Primary's to speak to us. She did a wonderful job helping the guests to better understand Mitochondrial Disease. We'd also like to thank Angie Larsen of ABC 4 who emceed for the evening. She was simply fabulous! Pictures from the event turned out awesome thanks to Chad Braithwaite of Faces Photography, and our spectacular documentary was a hit thanks to the many talents of George Evangilista. We'd also like to thank Wes Miles of Miles Studios for being such a fabulous DJ for the night. Thanks so much to Rob McDonald who did more than he ever needed, and to all the rest of our family and friends that helped us in some way to pull this off! There were so many people who helped even in small ways. Every little bit helps and makes a difference.

We raised more money than we'd originally thought and are so excited to be able help families with their medical bills and also to give to research. The generosity shown at this event and during all the prep leading up to it was so overwhelming. We were humbled at the amount of people wanting to help and give of their time or talents in some way. Thank you, thank you from the bottom of our hearts....

That Saturday night almost 3 weeks ago is one we will never soon forget. Many people's hearts were touched and as a result it made for a very special evening. May we all continue to spread awareness and education of Mitochondrial Disease and help these sweet kids whose lives are being affected.

 We are already planning our next event! This one will be much less expensive to attend and will be LOTS and LOTS of fun. So stay tuned for details. Hope everybody's having a great September, Fall is just around the corner!!!

Wednesday, August 17, 2011

Time to see the Cardiologist again!

  So a week ago we went to see the Cardiologist for Ramsi's yearly appointment and as usual, she is so good!
She knows the routine at any Doctor's office and she just quietly does what she is told to do! (very different than at home, of course!!)  The blood test we had done a month or so ago showed some changes in the sequence that deals with Cardiomyopathy and so we wanted to get in right away!

  Well, everything still looks great! So as of right now we really don't have to worry about it unless we see changes at home! We originally started to see the Cardiologist because Ramsi has a heart murmur and they have to keep an eye on it every year to make sure there are no changes! I really love the Cardiologist Dr Jou at Primary's that we see!  He is super positive and really explains things so us "dumb" people can understand!

  So here are some pictures of Ramsi being a good girl!! Enjoy!

Tuesday, August 2, 2011

Yearly Neurology Appointment

   Every year in July we take Ramsi to see her Neurologist at the MDA clinic at the U of U hospital. 
When we got there we ended up waiting 45 min in the room for her Doctor and she wasn't too happy about it, but as soon as we gave her Daddy's phone then she was just fine, of course!!  Once her Doctor came in he did his normal exam and asked all the routine questions. I talked to him about the Genetics Doctor we started seeing in May and he said he had already been in touch with her and spoke with her about the next few steps.
 We had a blood test done a month ago by the Genetics Doctor we see at Primary's hospital and she was doing a Genome test.  She explained that this test may or may not show something with the Mitochondria because sometimes it won't show up even if there is a problem. We still wanted to do it because she said there was a 20 percent chance that something would show up! 

 So, the Neurologist was able to pull up the results while we were there a couple days ago.  He said that nothing showed up for the specific test they were doing, but there was a change in the blood.  The change had to do with a sequence they look at for the Cardiomyopathy (can affect the heart, can cause deafness, and high blood pressure) Basically it went from an "A" to a "G".  He explained that it doesn't mean a diagnosis, but just gives them something to look into further.  

 At this point, we are just hopeful for any findings to know more about what myopathy she actually has. 
We are so thankful for such great Doctor's and such awesome friends and family!! 

  So Ramsi will see the Cardiologist for another EKG next week and then another series of blood test's that will take 2 months for the result because they are testing a few different things! 

  So proud of my little girl and so blessed to be her mom!  Thanks to everyone for all their love and support!!

Thursday, July 14, 2011

Change of Date for Event.....

We were lucky to lock down one of the locations we really wanted for this event. In order to do so we had to move the date back one week. The official date for our First Annual Benefit Dinner/Auction is Saturday August 27th, 2011.

This gradually got much bigger than we had anticipated which in turn will allow us to help even more families and also to give more to research. We know not everyone will be able to attend and we completely understand but we will be thrilled to see those of you that can make it work.

It will be a night to remember and we are supporting such a great cause. We are very excited and hope to be able to share this special night with as many family and friends as possible.

Tickets are on sale now. You can follow the link below to our website and purchase them or you can talk to us personally.

We appreciate the love and support thus far.... XOXO

Tuesday, June 21, 2011

Update on our first big event....

We have FINALLY set the date for our first event!!

Saturday August 20th, 2011 is the day. There will be great food, amazing company, and entertainment as well.

We have been very blessed by a special someone, Robert McDonald, who has many amazing connections with people who are more than willing to help us make this an event to remember. It will be simply amazing to say the least and we are very excited about it.

Details of place and time and more will all be revealed in time. When details are out we recommend purchasing your seat as soon as possible as seating in limited.

We look forward to you joining us for a fantastic evening that is supporting a great cause and helping some very special people.

In the mean time..... all your support and love have been amazing. We feel and see it in many different ways.

Stay tuned!! Website will be launched in the next week or two also so we will let you know about that as well.

I (Natalie) wanted to take a minute to tell Diana and Ramsi how much I love them and how glad I am that I got this whole thing started and that it's going like it is. I am thrilled to be helping such an amazing little girl and her mommy (my sister) as well. Between myself and Diana and Wendy, we have gotten much accomplished and have so much to look forward to.  I hope to continue this for a long while and to support as many people as we can and to also help further the research on Mitochondrial Diseases. My heart is full of love when I think of the good we can do as a foundation. My thoughts and prayers go out to all the Mito Families. We can make a difference together.

Hope you're all enjoying your Summer. XOXOXOXO

Thursday, May 19, 2011

A HUGE thank you to our AMAZING family and friends.....

We wanted to tell our family and friends how much all the support has meant to the Foundation. We are doing what we need to do and slowly but surely moving along. We couldn't have done any of this without you all! 

We are currently planning our 1st event and are very excited about it..... details to come!! 

Everything we are striving to do comes so easily when we have Ramsi and other children like her as our motivation. We want nothing more than to help these sweet kids in any way we can. With your continued support and your help spreading the word about our foundation we will be able to keep doing what we're doing!

Please don't for a second think we don't remember what you've done or appreciate you! We love you all SO much!

Monday, May 9, 2011

An easy way to show your support......

Happy Monday everyone. Hope you all had a great Mother's Day!!!

We have recently partnered up with and are really excited about it. They have a new deal every day and if you purchase that deal under our cause (Ramsi Reed Foundation) we get a portion of the proceeds. I have seen some really great deals in the few short days we've been a part of it. They are in select major cities now but will be in all major cities nationwide June 15th!! 

We will try to post things daily on our Facebook Page but will also have a link on this blog so you can check it out whenever you like. Check as often as you can and see if it's a deal you can take advantage of that will also help support us!

Please spread the word to fellow bloggers about our cause. Thanks so much for your continuing support. It means the world to Ramsi and her family and to other families in the same situation.

Have a FABULOUS week!!

Wednesday, April 20, 2011

Ramsi's Story

In September of 2006 Brandon and Diana Reed were living in Las Vegas and expecting their first child any day. Mom who went into labor at 37.5 weeks had a pregnancy without complications and was very excited to begin this new chapter in life.  Ramsi Alex Reed arrived on September 12 after a smooth labor and delivery. The happy parents left the hospital a couple days later with a new addition to their lives. Things couldn’t have seemed more perfect. 

 This new little family would soon realize their seemingly healthy beautiful baby was not progressing the way she should be. Mom noticed pretty early on that something just wasn’t right. Although Ramsi rolled over and sat up at a normal age, she wouldn’t put pressure on her legs to try to stand. With Ramsi being the first child, mom and dad had nothing to compare her progress to. Dad would always calm mom down and tell her everything was fine. 

When she was 9 months old they moved back to Sandy Utah where dad got a new job. This was when they really started thinking something was wrong. She was at an age that she should be crawling and was showing no signs of trying. She felt very limber all the time and when anyone would pick her up she had no strength to help hold herself up.

After her first birthday Ramsi was checked out by Early Intervention (a program through the public school system). They said she was a little behind but that in a few months she would be more efficient. They recommended physical therapy and occupational therapy to help her progress. Soon after they went to Primary’s Rehab and had evaluations. Months later, when she was 17 months old, Ramsi was walking. This was a VERY good day for Ramsi and mom and dad. She started Occupational therapy to help her crawl so although she walked first, she crawled at 18 months with the help of therapy.

Doctors were now telling mom and dad that Ramsi needed to be seen by a neurologist. They recommended this because she was doing a “gowers” motion to help her get from a sitting to a standing position. She was 19 months when they took her to the neurologist at Primary Children’s Hospital. From there they said she needed to see a specialist. The specialist ordered an MRI and a lot of blood work. She then had a muscle biopsy a couple of months after she turned two. This is when they found “ragged red” muscle fibers. The doctor wanted to send the biopsy to Columbia University to have a second look.

This sweet little child all in the first two years of life had been through many blood tests, an EKG, an echo-cardiogram, had her eyes and ears tested extensively, had a muscle biopsy, and been in and our of physical therapy and speech therapy.

This pretty much brings us to where she is today. Sweet little 4-year-old Ramsi was recently accepted into a program where the therapy is better and more advanced. She will continue with this as well as begin some genetic testing to try and find out exactly what mitochondrial myopathy she has.  

We are hoping that by starting this organization we can help raise even a little bit of money to help with the many medical bills the Reeds constantly have piling up. Ramsi needs the therapy and the genetic testing if they want any chance of knowing why this is happening, and what they can do to slow progression or possibly stop it all together. All of this is more than any small family can bare, let alone trying to come up with all the money to cover such extensive therapy and testing.

Other children with diseases such as these have ended up in wheel chairs at a very young age as their muscles slowly deteriorate, while others get so bad so fast that they pass away. Although Ramsi isn’t in as bad of a situation as some, things can change fast. These types of diseases may progress slow or fast, and nobody knows why it does one or the other. Children with this disease also have a hard time recovering from rather simple illnesses such as the flu and common cold which makes every day life that much more challenging. These are all reasons why we feel there is no time to waste. We need to start now in supporting our little Ramsi in any way we can. Every little bit helps and every little bit counts.