Well, here we are...a year into our "new life" with MPS II. I cannot believe it. I thought I would feel differently. I thought I would be grateful to look back and see how far we have come. But...I am scared. I am scared that this first year is one less year we have with Timothy. Most of all I am scared that this year was not cherished as much as I would have liked for it to have been. I can honestly say that this past year has been one doctor/specialist visit after another. I would like ...
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Hi everyone ! My name is Fabiola Forste and I'm helping my friend Giovanni with this particular case. They live in Lima-Peru (South America). 2 years ago his sons (Gabriel & Joaquin) were diagnosed with MPS II. Unfortunately there are not drs. with MPS background in Lima due to there are not too many cases, and of course there is no medicine and treatment for it. (Gabriel & Joaquin are 3 & 6 years old). A group of friends and I are trying to ...
We have known since the time that Landon was about 18 months that something wasn't right. Right after he turned 1 he would say "ball" and "baby"but that was about it. He didn't seem to interact with his peers the same way as other kids his age. He had recurrent ear infections as a baby and has 2 sets of tubes placed. We took him to doctors constantly for the first 2 years and they could never come up with anything. I got responses like "all kids are different" "he'll ...
Hello, We haven't been on for a while. Yesterday Christian comes down the stairs with a night light in his hand chopping away on the bulb. It was quite a shock and instant " Oh, what do I do?" I managed to get my finger in his mouth and pull out the big pieces and then took a wet washcloth and washed his mouth out with it. I took and put him over the kitchen sink and turned on the spray hose and let the water wash out his mouth. He looked at me and Vitoria as if what is the big ...
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