Living with SMA Monserrat Singing

My summer so far.....

 Hi everyone! I hope that you all have had a great summer.  I am sorry it has been so long that I have updated my status. This summer I have had some good times and very complicated situations. My teachers and therapists have the summer off too so that makes my summer a little boring. With that said I am looking forward to their return. I have had to spend the majority of my summer in bed because of my wheelchair is broken. It is unable to sit in the upright position which keeps my back arched in a very uncomfortable way. My body is unable to tolerate it for very long.  i only use it for Doctor appointments and church.My wheelchair is special because it needs to be able to hold all my breathing equipment. My parents can't afford to buy a new one for $8000.00 so if anyone has any info as to where I could maybe get a used one please send me the info. On top of that my parents are also looking for a wheelchair accessible van to purchase. They are searching for a used one but even those cost a lot. My family continues to keep their faith and hope that things will work out. If you have any information with organizations that have these items at affordable prices please send me the info. It would be greatly appreciated. Thank you.

If You Were Diagnosed With an Incurable Disease.....

If you were diagnosed with an incurable disease, and were told: "You won't be able to move your arms, will not be able to walk or run, and that you have small probabilities to live. I am Monserrat Hernandez, and SMA is my diagnosis. There are a number of things I wish could come true before I have to go. Please take the time to look at my bucketlist. Please help me. Share my story. My biggest wish is that there will be a cure for SMA, and with your donations we'll help the SMA program for genetic testings and therapies. Please help me.....

You can contact me through www.monserrathern.blogspot.com, https://www.facebook.com/MonserratHernandez08,
 or https://twitter.com/MonseBucketList.com,
or monserrat.hernandez08@gmail.com

or Monserrat Hernandez (Bucketlist)
5663 Balboa Ave PO Box 168 San Diego, CA 92111-2705

Phone #: 619-665-3006

I'm too young to go, please help me with your donations so that the search for a cure continues, and I can continue living.

My Video 3/10/13 at OneTrueMedia.com

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My Video 2/2/13 at OneTrueMedia.com

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Johan reading to Monserrat at OneTrueMedia.com

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My Video 1/28/13 at OneTrueMedia.com Monserrat Hernandez

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My Pleasant and Unpleasant Experiences with some Foundations. Monserrat Hernnnandez

A few years ago I joined organizations in search for help with supplies and personal necessities. To be a part of these organizations they came to my home to take pictures of me and had us fill out information on my diagnosis. A year passed and we did not hear a response from any of the organizations. My social worker was able to contact one of the organizations who donated a drawer for my clothes but I do not remember the name of the organization. I am still grateful for this gift. I have found that some of the other organizations still have me and other children on their website asking for donations in clothes, rent, toys, and financial help.  It's been almost a year that one of these foundations (M.T.F) have had me on their main page and have not heard from them at all. I would appreciate for this foundation to take me off their website if their not going to help. I am very grateful for Passion 4 K.I.D.S who have had me on their website for over a year and they have helped with an air conditioner, electric generator, some supplies which are vital for my survival plus a metal door. Also I'm receiving therapy from a therapist they sent. This is the most someone has helped me with and I'm very grateful. Note: From now on if anyone would like to help you can email me personally. But I am in need of your support to continue living as comfortable and healthy as I can and to continue to search for a cure to SMA. Thank you!

This Month Has Been Of Happy Moments Monserrat Hernandez

This month I had a lot of doctor appointments, I had my first speech therapy in the hospital. Before the hospital I would receive my speech therapy only at home. The therapist asked me to communicate using my eyes, and I did. I can also communicate through special equipment, a computer and an IPad. I also visited Balboa Park and had the opportunity to enjoy the breeze, the sun, the huge water fountain. I enjoyed watching my siblings playing around. My family and friends enjoyed a picnic and later on my siblings got to go on a train ride. In my 7 years of life it's my first time going out with my family. I hope to be able to go out again not too long from now. I returned home happy and the rest of my days have been regular. My parents work hard along with the nurse to keep me comfortable and well attended.

My Video 1/19/13 at OneTrueMedia.com

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Thank You God for Another Year of Life! Monserrat Hernandez

I thank God that I'm granted another year to live beside my family and friends. So far the new year has been uneventful. Doctor appointments are the highlight of January, but I'm ever so thankful, and so is my family, that I am here! God bless everyone. Count your blessings every day.

Christmas Day Has Passed

Christmas Day is over, but our Lord is here to stay; reason enough to celebrate every day! We had a good Christmas. Opened up our gifts in the morning. Spent time with family and friends. Mom and brother went to church on Christmas Day. I wish I could have gone, but was not able to. Looking forward to the days ahead and celebrate the New Year! I'm really hoping that the New Year brings the possibility of accomplishing everything on my bucketlist,  but my family can't do it alone. Please help me accomplish whatever's within  your possibilities Hope all of you had a wonderful Christmas! Blessings to all of you.

Christmas is Here!

In my home you can already sense Christmas in the air! The tree was decorated last week. I was helped to place Christmas decorations on the tree through others' helping my hands. Santa Claus came over to visit me! This is a busy month for me with so many doctor appointments. What if Christmas doesn't come with gifts? This year seems to lack the possibility of gifts. I don't perceive the enthusiasm and movement of gifts. Even without gifts, at least we have each other as a family and will be celebrating together this beautiful tradition that is Christmas (Birth of Jesus)

Monserrat Hernandez My two day hospital stay

Two days ago I had to go the hospital. There was a bit of blood residue coming out of my gastric tube. I want to talk a little about my condition and how I live with it. My mom and I want to create awareness about this condition which has no cure. There are 4 known types of Spinal Muscular Atrophy, I will concentrate on type 1,which is the one I have, also known as Hoffman's Syndrome.It is the most severe and generally affects the baby during the first months of life. When born, babies appear flacid and they don't acquire motor  skills the way other babies do. For example, they cannon lift their head, sit,, or crawl. It also affects the muscles of the respiratory system and digestive system. A mechanical respirator (like the one I have) is needed so that the child can bread the easily. Also a feeding tube that goes into my digestive system is needed so that I can  eat and live. In general, someone with  this condition has a life expectancy of 2 to 4 years, and the main cause of death is complications to the respiratory system.Cases exist where some have lived longer with the help of respirator.

Monserrat Hernandez: Why a Bigger House?

Hi ! My parents suggested to make a blog where they could document some of  my history. I don't understand much of this . My mom suggested a wish list and I have high hopes of having them come true.
Spinal muscular atrophy has robbed me of my mobility. It's sad to not be able to be like any other normal

normal little girl.I want to grow, there are so many things I want to do (dance, play, jump), and get to know places. My mom tells me to imagine that I'm doing all of those things that I want to do, because in my mind I can think, in my mind, I am free.

I live in a small apartment I have a bedroom,but it's so small, that only half of my medical equipment fits in it. The other half I have in the living room, next to my wheelchair. I don't have a bathroom of my own, and I need it. My pediatrician and rehabilitation specialist have constantly recommended that I be bathed in the bathroom, because I've always been bathed in bed.In the bathroom my wheelchair doesn't fit, and we cannot rebuild the bathroom because this apartment is not ours. That's why I need a bigger place. Even though my parents don't understand much about blogging, we'll continue to post updates. Does anyone have any suggestions for the blog or the pursuit of a new home?