Please click on my other media items too for other details. At the bottom of this page, is a broken down list of what the money will go toward if she wins her wish. I am not requesting any money for her additional wishes that make a wish could not cover. She can do without these until another time. I am only making the wish, for the amount for the friend to go with her. We have received $90 from some very wonderful friends, so I am making the wish for $600 this time instead of $700. If we win the wish and she receives any donations over the total of the $600, we will apply it towards Macy's additional wishes and surprise her. I know this seems high, but if you look at the prices at bottom, you will see that this amount is cutting close.

Right before Christmas, our lives were changed forever with the news that Macy had a terminal, incurable and progressive disorder known as Mitochondrial Complex I.

We were just devestated!!! I felt like someone had just ripped my heart out right then and there, and from that point, my life was simply over. I knew that in no way, would I ever be able to live without either of my children. Most of me died that day, and nothing has ever been the same since.You can read my journal entries from beginning until now and also read about Mitochondrial Disorder Complex I an how it affects Macy's life.

My Journal: The beginning


My little girl was recently diagnosed with Mitochondrial Disorder Complex I and a Hereditary Spastisity Syndrome. The first is the worse, as it is fatal. It is incurable, irreversible, and progressive. When I initially found out about it, and how bad it really was, I felt my world fall apart that very moment. I could not process or comprehend anything the doctor said after "all you can do is take measures to slow the process and make her happy for as long as she has" These words were my worse nightmare come true and I have not been right ever since.

I feel as if my life is over and can't even express how devestated I truly am. I have to look at Macy knowing this everyday. I am heartbroken and although I have laid her at the Lord's feet and pray for a miracle, I can't just sit back, I have to do something. I need your help and am begging you for it with all my heart and soul. I have to save her and need research, prayers and support to do it. I do believe in miracles and although I am falling apart, I do have hope that there is something out there!

About Mitochondrial Complex I and how it affects Macy:

It is a terminal, progressive and degenerative disorder in which there is no known cure or treatment. It causes children to go blind and deaf but the worst part is it's terminal. The Mitochondria in the complex I transport chain is "sick". This is the chain in which energy is transported throughout the body to all the major organs. The Complex I disorder is a very rare, and new disorder so not much is known about it yet. This has makes it difficult as there is only a handful of "specialists" on this disorder in the world and most are based outside of the US.

The only way I can understand or explain it is that her body does not produce the energy necessary to correctly function her muscles or major organs (such as brain, heart, lungs, liver, kidneys etc.) and eventually, the major organs begin failing and the body simply shuts down. I don't want to leave it "as is" so I want to include that this is the prognosis based on most complex I cases. I have hope that with so much being unknown, there is hope that all cases do not end up this way.


The other life threatening factor to this disorder is that the body does not metabolize food correctly causing a condition known as "Lactate Acidosis." This is where the food that is not metabolized properly, builds up as lactate and toxins in the body and acts like a poison. It builds up, slowly poisoning the body.



Mitochondrial patients are also more susceptible to infections, viruses etc. We must be cautious of all infections, viruses or illness, as her body is not able to fight them off as the normal child. Flu, pneumonia or anything affecting the lungs or other major organs, are more deadly to her for many reasons, one of which is the constant danger of dehydration. Even a common cold is dangerous for Mitochondrial patients and it takes them much more time to get over illnesses than the average person.

For example, when Macy was a baby, she developed RSV 3 times which is rare. It took longer stints in hospitals and more fluids to fight it off. She had strep throat 11 times last year, which took a toll on her body because we were unaware that she had this. We continued sending her back to school and she would catch it right back. We must keep her from anyone that has been exposed to viruses, flu etc. if at all possible. It is understood that you cannot keep a child from getting sick or enjoying life but we must be more cautious than normal because in her situation, it poses a greater risk to her life.



She does still have Epilepsy but we are not sure if she still has CP, or if it was the Mitochondrial Complex I the whole time. The disorder has mostly affected her lower limbs up until now. She has been having gait problems, balance problems and has been crippled for several years but now, she is severely crippled to the point to where often, she must be carried or wheel chaired. She can walk, but gets very weak, very fast with her crippling. Her muscles are drawing severely and rapidly, and it is very painful and causes her to become weak easily.

She is scheduled to have surgery to clip her heal cords and to stretch the ham strings and lower leg muscles. There is a concern that it is beginning to progress further up because she is unable to hold her bladder and so it may be affecting the kidneys too but we are hopeful that it is something simple. We are awaiting an appointment with a speialist.

My Journal: Macy's Journey continues.....

Because of my wonderful friends on the internet, we found a specialist in Cleveland Ohio at The Cleveland Clinic Foundation. It was also thanks to them we made it there and got some encouraging news. There, she was further tested because he felt that she was not the "typical" case of complex I, which made him wonder if it may have been the wrong diagnoses.

Unfortunatly, we have recently gotten the tests back and they were positive as Complex I BUT.... He states that because she is not the "typical" case with the typical pattern, that she may be an exception to the rule which to me says, she may react differently that other "typical" cases. To some, this may seem like denial but to me, it means hope. The specialist also stated that if indeed it was complex I, that it has contained itself in the lower body so far, which is hopeful.

As of now, we are in the process of having her major organs checked by organ specific specialists, to see if the Mitochondrial is affecting any other part of her body at this time. We are also still committed to finding a cure or some form of treatment. We will not give up hope and her journey will continue. We appreciate any and all input, research findings or information anyone can provide. Please keep her in your thoughts and prayers and please visit Macy's caring bridge site at www.caringbridge.org/visit/macysparade to see updates, photos and more. Please also sign the guestbook. She checks it faithfully and loves to see new entries. lol


Macy's wish details

Macy wishes to go to Disney with her friend, swim with the dolphins, spend a couple days at the beach and visit the disney boutique for a princess makeover and photo. Make a wish is unable to cover the friend because Macy has a sibling. They also only allow one primary wish, which is disney, therefore they consider the dolphins, beach and princess makeover "additional wishes."

Make a Wish FAQ'S from the site
Will the child?s family be included in the wish?
Your family is a very important part of the wish process, and your Wish Granters will do everything possible to make the wish memorable for everyone. Wish participants include immediate family only: two parents or guardians, the wish child, and the child?s siblings. In addition, a single parent may include a second adult, and a child with no siblings can invite a friend to participate in the wish.

I have made a wish for Macy on RHF and hope you will consider voting for it. It is to be able to take her friend to Disney World with her. I did not wish for the amount for all of her wishes, only the amount to cover the friend so I am not trying to be greedy. If she wins, the funds will go for the following:

3 day Disney World park hopper for friend - $210 online, higher if purchased there
2 day Universal Studios/Island pass for friend $ varies (not figured an actual price yet but 1 day pass is $67)
1 day friend's addmission to Sea World $58
and if anything is left over, it will go towards whatever of the following wishes that we can fit into budget
Bibbidy Bobbidy Boutique - Princess Makeover
Dolphin Swim at discovery cove
night's lodging for the beach

I sincerely appreciate each and every person that supports Macy! I can't even express how much it means. Win or lose, she is blessed that so many are thinking of her. Thank you from the bottom of my heart!