We need inspiration for our next news... - Leukodystrophy Su...

Leukodystrophy Support

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We need inspiration for our next newsletter!

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We've started writing our next newsletter, which you should receive later this year. However, before we print and distribute our newsletter to you, we would like to hear your stories from this year. If you would like to get involved in sharing your stories, please write them below.

To take a look at our past newsletters:

aldlife.org/news-research/n...

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bluesweets profile image
bluesweets

My son James hard a rough year. In January he was moved again because his home was under construction. He did go to a very nice family for 3 months. He had ball there, they had 2 dogs which he loved to feed every day. And there was a girl and a boy that he had a blast with. When returning back to his home in March his health had started to decline. He lost a lot of weight and was getting lots of open sores that just would not heal. Also he had mrsa in his bladder that antibiotics would not clear up. In July James was put on hospice at that time they did give him long to live. So we did lots of fun things with him. He went to the zoo in Springfield MA which he loved there was monkeys there. James loves monkeys. He went to a fisher cat baseball game had his picture taken with the mascot. Clark trading post , he rode on a train and saw the bears do there acts. He went to the Tumbrige fair. Since James loves Christmas we had Christmas in August for him, we decorate for him had a Christmas tree and even Santa came. James got lots of presents. There was some wild animals that came and visit James also. In September James wish finally came true he went to Loudon and saw the NASCAR race. James did get a little overwhelm from all the noise but he did have fun. After that James did decline fast. He was bed ridden the remaining of his time with us. October 10 was the last time he had anything to drink. He started coughing and choking on a shake. On that day I stopped any extra feeding supplements going threw his g-tube. I still cant explain why James hung on as long as he did with nothing to eat or drink except for the little bit of water that went threw his g-tube to flush it after his meds. Most of the time he was alert. He did see the Boston red sox`s win the world series on his t.v. and he also join in on the Halloween party. But around 10:00 that night James temp kept going up. And he was very uncomfortable he was getting morphine every 20 minutes. So I knew something was up. On November 1 at 5:00 am I saw a flash come threw the window I told James grammie was here to bring him home. Also he spiked a fever of 106. I put one arm over him and held his hand with my other hand. At 5:15 James nurse came in and gave him his 5:00 meds. At 5:19 James passed away in my arms.

in reply to bluesweets

Hello Bluesweets,

Thank you for getting in touch. I am really sorry to hear about James. I am however pleased to see that you have got involved in sharing your moving story with us.

I will try to see if we can get your story added to our newsletter, which you should also receive later this year.

Thanks again

bluesweets profile image
bluesweets in reply to

Hi Sara,

You are welcome. And thank you for sending me a copy of the new letter.

Your welcome as well!

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