Mastocytosis Will Not Stop Me

About Me

Erica was born 6 weeks early weighting 4 pounds 14 ounces. She was first diagnosed with severe reflux. She would reflux to the point were she wouldnt be able to breath. From the day she was born her skin always had a blotchy look to it. The doctors told me its normal with newborns shes just cold. Well as Erica got older it never went away and it wasnt because she was cold. When she was almost 1 Erica was diagnosed with Mastocytosis. A rare blood disease which causes her body to have to many mast cells. Over the last few years this blood disease has caused many issues for Little Erica. She had a feeding tube for a short time while she was a baby, shes had failure to thrive which is were she isnt interested in eating. She also had malabsorbtion were the food she was eating her body was able to absorbe the vitamines and minerals from it. Erica will be 5 in april and she finaly weights 31 pounds. To some thats no big deal, but for Erica who has had trouble gaining weight her entire life this is a big deal for us. Right now because this blood disease is NOT well known we have to travel anywhere from 1 to 2 hours depending on which hospital we take her too. If I was to take her to the local hospital here they would kill her and I know this because they almost did. People need to take every part of this disease serious. So many doctors say oh its not a big deal. Because of those words I have known some people who have died as a result of lack of knowledge. Please take the time to read our blogs and learn about mastocytosis. If you pass the word to atleast one person and they do the same we can finaly get the word out there and make it a safer place for my daughter and everyone else who suffers from Mastocytosis. Thank you all for all your support and help to spread the word MyGen Profile Generator MyGen Profile Generator MyGen Profile GeneratorCursor by www.Soup-Faerie.Com

My Interests

I'd like to meet:

Other people with mastocytosis and other illnesses:) For everyone who has sent me a picture to use in this video. I thank you from the bottom of my heart. I would not have been able to do this with out you all. HUGS ..

Books:

Heart To HeartDear Lord I ask today, Why my body wastes away? Why it turns against itself? When all my friends have their health?Why the mast cells inside of me, Have now become my enemy? What should be life inside my veins, Is now the source of all my pains.I long to eat and not be sick, To be free from all the needle sticks. To run and play without the fear, That another rash or symptom will appear.But from Heaven above God replied, I know want the reason why. But "why" will never ease your pain, Nor restore the life inside your veins.There is an answer and a cure. For Mastocytosis I'm sure. Hope is the life that I give. It's the only way you all can live.The cure you see begins inside. It starts with you and I. When love decides to give away, What you've really given is another day.By Baron Griffith

My Blog

Where Ive been

First off I want to say thank you to all our friends here on myspace. I am sorry I have not been able to get online much lately like I used to. Some people say I don't know how you do what ...
Posted by Mastocytosis Will Not Stop Me on Thu, 24 Apr 2008 08:50:00 PST

If you have masto or know someone who does I need your help...

Ok here goes. I have so many things that I have been busy working on. I am trying to get it so the The Mastocytosis Society gets a booth at this years annual pediatric conference. This would be so hug...
Posted by Mastocytosis Will Not Stop Me on Fri, 25 Jan 2008 07:38:00 PST

Camp Sunshint

As some of you know Erica was the first child to attend camp sunshine who had mastocytosis. I can not even begin to explane what an awesome weekend we have had. The first night was so overwhelming but...
Posted by Mastocytosis Will Not Stop Me on Tue, 02 Oct 2007 07:10:00 PST

School day 5 crashing downwards already

We hope that everyone is doing well. So many people keep asking me how am I enjoying the day while the kids are in school. Ive spent so much time...
Posted by Mastocytosis Will Not Stop Me on Wed, 12 Sep 2007 07:40:00 PST

Ericas first 2 days of school

Things are finally coming down so I am able to post a new blog. Erica started kindergarten yesterday. Boy what fun that was. I got all 3 kids off and on the bus. Then walked home and drove to the scho...
Posted by Mastocytosis Will Not Stop Me on Sat, 08 Sep 2007 06:49:00 PST

Somethings causeing Erica to have anaphalexis events

Hi Everyone, I hope everyone is doing well and having a great week. Things here just don't seem to want to settle down lately. Today Erica had her second anaphalexis reaction in the last 48 hour...
Posted by Mastocytosis Will Not Stop Me on Tue, 17 Jul 2007 10:45:00 PST

Summer Camp For Sick Kids

On sunday I got an email from a girl named Ashley who has Mast Cell Activation Disorder (MCAD) She has been a camp counceler at Camp Sunshine for 4 years now. Camp Sunshine is a non-profit camp for ki...
Posted by Mastocytosis Will Not Stop Me on Tue, 26 Jun 2007 07:59:00 PST

2007 Annual Mastocytosis Conference

Hi Everyone, I have been working hard on many things for awareness. If you look under who I want to meet you will find a video I am working on. Its NOT done and I will be making a few changes. H...
Posted by Mastocytosis Will Not Stop Me on Fri, 08 Jun 2007 07:35:00 PST

Updated Tags and Banners to for mastocytosis. Help your self

Hey everyone here are some tags and banners to help spread the word about mastocytosis. If you would like some please help your self, please just leave me a message. If you have any ideas for more of ...
Posted by Mastocytosis Will Not Stop Me on Fri, 12 Jan 2007 10:31:00 PST

To make a donation

How can I Make a Donation to TMS?Making a donation to TMS is easy. You can make a tax deductible donation via our Donation form* or you can contribute to the Angel Fund or Scholarship Fund described b...
Posted by Mastocytosis Will Not Stop Me on Thu, 11 Jan 2007 07:00:00 PST