Happy 5 month birthday to the OPS “T” litter!! Shown here are siblings Dakota (L) and Tatum-Rae! Stunning long coats from Ava vom Old Post and Dante vom Hunter Haus. So proud of the puppies we produce for are loyal repeat customers!!*
Photos courtesy of Ally Hill and Krissie Sward *
What a surreal and powerful experience... we got to tour the lab where they are making breakthroughs and developing a treatment that could greatly improve the lives of our GSD1a kids.
We were humbled to once again see how much those working at Generation Bio really try to connect with PEOPLE so that they can better understand what life is like for those living with the conditions they are working on.
To see the wheels in motion and know that there is hope for improvement and progress in treating GSD1a within our lifespan is priceless. We can’t thank those who are working hard enough!
Why have I not posted in a while?
Well last week was absolutely horrible if I’m being honest! I had just gotten over a bug (that I had caught in a&e) and I went to the hospital (my weekly visit to check my PEG) and caught something else! I had 3 days where I wasn’t feeling sick, well sicker than normal😂 I had gastroenteritis which sucks🙄 for those who don’t know what gastroenteritis is, it’s a stomach bug that involves a lot of vomiting and diarrhoea! It was awful😩 when you have a weak immune system you catch things extremely easily and when you do it hits you worse than it would any “healthy” person. I slept most of the time! If I wasn’t asleep I’d be in the bathroom, tmi I know😂
Before anyone says anything I do take every precaution I can when going to hospital to prevent sickness! I have a Cambridge mask which I put on in the car and do not take it off until I’m back by the car! I use a LOT of hand sanitisers, I have a wheelchair as I can’t walk much so that means I don’t need to sit on chairs others have sat in, I don’t touch things unless I absolutely have to (when I need to I usually sanitise it first if I’m able to) and I avoid going to the toilets unless I can’t hold it in!
I’m much better now and I’m so thankful for Pamela (aka my feeding tube) as without it I would have been admitted! So grateful I’m able to get these sort of things💚
Also a little Pamela update! It’s so much better, it’s healed up nicely! I have a bit of granulation tissue at the moment but that’s nothing I can’t handle or need extra help with! This is my first post using my new phone (iPhone 7 plus) and it’s so weird!!😂💚
1 2723 February, 2020
Let’s just say the yellow snow was not lemon flavour 🥶❄️🍋
Hi guys! So I have had a lot of people sending me dms asking about genetics! So I thought I'd address the most asked questions. I hope they make sense!😊
• Is your brother affected? No he does not have GSD. We don't know if he's a carrier of the defect gene or not as he's not been tested, my Mam decided she didn't want him to get tested when he was younger and that he should decide if he wants to know, he says he's unsure if he wants to know and thats okay! • Who passed down the gene? Both my parents have one normal and one default copy of the gene, I only have the default gene. For an individual to have GSD both parents have to have the default gene!
• If your parents would have had more kids would they have the condition? More than likely yes. It starts off with a 1 in 4 chance, I was 1 in 3, the next child would be 1 in 2. My parents were told if they'd have another child they'd have GSD and would be worse than I am.
• If you have children will they have the condition? If so would you want children? We won't know until the hypothetical father of my hypothetical children gets tested as he'd have to be a carrier too! If the father did carry the gene there's a good chance the child/children would have the condition. This has always been a question I've wondered about for as long as I understood the whole genetic side of it all, will I have children? Anyone who knows me knows I've wanted children for as long as I can remember! I'd love to have 2-4 kids but if I knew there was a very good chance they'd get the condition I don't know if I'd want a child, not because I don't want to deal with a medically complex child but because I wouldn't want my child to go through the same things I have. Although I know more now then what my parents did when I was younger it still doesn't stop the suffering and I wouldn't want that for my child. Would it be selfish of me to have a child which could possibly have GSD? What's your opinion on this topic?