Member Profile
Another one of our amazing members
Macyswish
| I am a mom of special needs child who's passion is volunteering and supporting children's causes | |
| Member Since: | April 8, 2007 |
| Location: | United States |
| Gender: | Female |
| Birthday: | November 29, 1974 |
| Status: | Married |
| Profile Views: | 189 |
Bio:
My purpose here is for a sweet little girl who has had a long hard journey in her life. Well, it would also be nice to meet some new friends lol Please read her story and be sure to see my Media gallery photos, more about her story, updates, and learn more about her disorder. Macy was diagnosed with Cerebral Palsey & epilepsy when she was a baby. Now she has been diagnosed with something worse on top of it, Mitochondrial Disorder Complex I. This is a terminal, degenerative and progressive disorder which there are no known cures or proven treatments. It is a disorder that affects the entire body and system ie. muscles, brain, heart and all other major organs. It basically shuts down the body entirely. First threat, is that her body does not produce the energy to function the major organs so eventually, they simply shut down. Second threat is that her body does not metabolize the food properly referred to as "Lactate Acidosis" which is basically where the toxins left over after the metabolizing process simply builds up in her body acting like a slow poison and in essence, poisons the body. Many of these Mito children die of poisoning itself. It is typically a rapid disorder with a high fatality rate. Most of these children do not live to be a teenager. Visit www.caringbridge.org/visit/macysparade and email Macy and family. She loves to get mail lol Macy is facing surgery and we want her to be able to enjoy her biggest wish before this surgery if possible. Macy is crippled and may face life in a wheelchair but hopefully, this surgery will delay the need for her to be in a wheelshair all the time. This disorder causes the drawing and cripplind that she endures and she gets weak very often so this surgery is our biggest hope. They are going to clip the heal cords, stretch the hamstrings and the lower leg muscles. It will not stop her crippling, but may help delay her use of a wheelchair 24 hours a day. She will be in a cast for 3-4 months afterwards and there is a huge risk with Mito patients and anestisia so it is scary that they will be putting her under. There is also a risk of paralyzation which terrifies us. We want her to enjoy this wish before her surgery. Macy was accepted by the wonderful and amazing Make a Wish foundation. Macy's wish is to take a friend along to Disney world, swim with the dolphins and spend a couple days at the beach. She has never been on a real family vacation and dreams of seeing the ocean. She had a few other detailed little wishes threw in there like all little princess do, go to bibotty bobbity boutique and get a princess makeover and eat with the princesses....Let's see, I think that's all lol but the above three wishes were the wishes were her biggest. She knows all of her wishes will not be possible and I wouldn't ask for that much to make them all possible and be greedy, but if we can just get the friend to be able to go, it will be the miracle for her. Unfortunatly, Make a wish will be unable to cover the friend, dolphin swim or the couple of nights at the beach because these are considered extra wishes. The policy is one wish which Disney world is her one wish. The only way that they will cover expenses for a friend for companionship, is if you do not have a sibling which in this case, she has a sixteen year old brother. This is not much companionship for a little girl her age so we want her to be able to take her friend but are going through so much with medical, care for Macy and trying to live, and in a dire financial situation, and can't afford to do this for her. Make a wish will supply family tickets, food and all but not the little friend. I want to help her be able to have all her dreams come true! The other situation is that by Make a wish policy, they consider the dolphin swim and the days at the beach additional wishes and they can't cover these. It was suggested we raise the money for these but this is difficult to do for several reasons. First, our family is going through so much with the medical travel and just the fact in dealing with this life altering news that they just can't focus on anything else at this point, which is quite understandable. Secondly, the only way that you can fundraise in the area (ex. car wash, benefit singing, collection jars) is if you are an organization or group. If fundraising for an individual, it must be for medical or funeral expenses only. Make a wish will cover the family's passes for three days at disney world, two days at universal florida and one day at sea world. They will cover the family's food and travel to and from florida. This is what basically comes with make a wish/disney world trips. What we are needing at the moment is the passes to the theme parks for the seven year old friend, the passes to swim with the dolphins for the wish child and the couple of nights lodging at the beach. If possible, and we can come up a bit extra they can have a meal with the princess and a princess makeover at the bibboty bobbity boutique for her and the friend. Our goal is $700 dollars. This, I hope would be enough to cover at least the friend to go and maybe a bit extra for one of the additional wishes. I have checked pricing for everything and they are listed under "Macy's Journey with Mitochondrial" in my Media Gallery. The passes alone would take much of the $700. The friend is allowed to lodge with the family at GKTW, through make a wish though so that was good news. Also, we can give our meal vouchers to the friend and share so food will be covered if this is allowed. The parents of the friend, are not in good financial shape either. Her friend also is disabled and has some medical problems which have made finances for the friend's family difficult as well, so they are unable to cover it themselves. I hope this is not seeming selfish because I know that she will love just getting to go on vacation at all but I just really want to help her make all her wishes come true. If you have a child of your own or children that you love, then you know what I mean. This little girl deserves all her dreams to come true! Thank you to all my wonderful care2 friends that have came to support Macy!!! Also, If you have any suggestions or ideas on other ways to make the passes for the friend, I would appreciate them Also, before anything, we are on a mission to help save Macy's life. This disorder is so rare and there is no known treatment at the moment. It is a very sad disorder. It is progressive, degenerative and basically when it hits, it shuts down the entire body. If you have any resources on this disorder, please send them to me. Thank you
June 23
Macyswish and indomitablefae are now friends1:02 AM
June 12
- Macyswish and Sah4ra are now friends12:51 PM
June 6
- Macyswish and Maquetaurie are now friends1:06 PM
April 17
- Macyswish and cookie are now friends10:18 AM
March 18
Gloria100 commented on Macyswish's media item11:26 AM
March 13
- ANGEL2CF commented on Macyswish's wish (A special wish 4 my terminally ill little girl Macy. Thanks)4:00 PM
- ANGEL2CF commented on Macyswish's media item3:54 PM
February 18
- Macyswish and bobschwerin are now friends3:38 PM
December 31
- Macyswish and Clifton are now friends9:42 AM
December 22
- Macyswish and MyBabies are now friends6:14 PM
Personal Information
| Member Since: | April 8, 2007 |
| Activities: | Reading, hiking, nature, camping, music, movies, relaing, cooking and spending time with family and friends. |
| Interests: | Volunteering for causes that benefit children and animals. I am also interested in journalism and ministries. |
| Favourite Music: | All but classical |
| Favourite Tv Shows: | Grey's Anatomy, CSI, Cops, Close to Home, Ghost Wisperer, AMW |
| Favourite Movies: | Pay it forward, |
| Favourite Books: | Horror- All of Stephen King, Anne Rice, Wes Craven |
| Quotes: | I have a few - "No Act of Kindness, no matter how small, is ever wasted." "One hundred years from now, it will not matter what my bank account was, how big my house was, or what kind of car I drove. But the world may be a little better, because I was important in the life of a child." Every child comes with the message that God is not yet discouraged of man. |
| Like To Meet: | Our Lord |
| Heroes: | Children - They are inspiring, kind, strong, innocent and caring of others. If you want to see what the Lord meant for us to be, just look into the eyes of a child. |
Current Wishes
Past Wishes
Friends
Media Gallery
12 media items in 1 folder
To Macy from a wonderful friend
Apr 9, 07
To all of my wonderful RHF & Care Friends
Apr 10, 07
