The British Heart Foundation is a cause close to my heart. (Pun intended). We have a monthly standing order donating to them, which shows how important they are to me.
You should be getting the donations!Have heart disease myself and lost my Dad to a sudden heart attack 2 years ago, so more than happy to donate.
Wow, how worrying for you. How is she? Does it affect her a lot? She's a cutie!
Unfortunately she is in the beginning stages of heart failure. She also is having bouts of hypoglycaemia which is tied to the heart failure (they think).Wow, how worrying for you. How is she? Does it affect her a lot? She's a cutie!
Your post has only served to remind me (and I am sure many others) just how much misplaced importance we place on so many trivial things in our lives. Your indomitable spirit and optimism makes me feel extremely humble. I sincerely hope that a transplant becomes possible soon and the future begins to look more promising for you and your family. You are without doubt an inspiration and source of comfort to any parents out there facing similar circumstances.Unfortunately she is in the beginning stages of heart failure. She also is having bouts of hypoglycaemia which is tied to the heart failure (they think).
She is under GOSH and is on the heart transplant list.
She lives life to the fullest she can manage, by 17:00 or so she is done for the day. she gets really frustrated that she cant keep up with not only her peers, but her Brother who is 2 years younger than her. She knows she has a *poorly* heart but doesnt understand what that means.
Life is incredibly hard for both us and her right now, she cant regulate her own temperature, so we have to check on her every couple of hours overnight during cold snaps or heat waves, its a case of layers, so clothes on and off rather than upping the heating or directing fans at her, add in the bouts of Hypos its currently checking every 90 mins that her Glucose levels are ok, we are waiting for a decision on what the the Cardiac boffs want to do about the latest symptom.
With a heart her future is mostly secure, without one we dont have a tonn of time left. It is the reality, and we have known it since the diagnosis at the 20 week scan. She is going to Nursery as much as she can but it really takes it our of her. We are trying to give her as normal life as possible and not let her diagnosis become who she is.
The yellow Spurs shirt is the first proper shirt she has as she is small for her age, she loves it and knows its *Tokkenham Hockspurs* and Daddy loves them. I want to try to get her up to the Lane as I know she would love it. She gets to stay up and watch the evening games, but in reality she is asleep before they start.
We were hoping she would be older before these things happened but her heart function has always been moderate at best and her sats now sit at around 76 as normal. We are optimists though and I know she will pull through,
Unfortunately she is in the beginning stages of heart failure. She also is having bouts of hypoglycaemia which is tied to the heart failure (they think).
She is under GOSH and is on the heart transplant list.
She lives life to the fullest she can manage, by 17:00 or so she is done for the day. she gets really frustrated that she cant keep up with not only her peers, but her Brother who is 2 years younger than her. She knows she has a *poorly* heart but doesnt understand what that means.
Life is incredibly hard for both us and her right now, she cant regulate her own temperature, so we have to check on her every couple of hours overnight during cold snaps or heat waves, its a case of layers, so clothes on and off rather than upping the heating or directing fans at her, add in the bouts of Hypos its currently checking every 90 mins that her Glucose levels are ok, we are waiting for a decision on what the the Cardiac boffs want to do about the latest symptom.
With a heart her future is mostly secure, without one we dont have a tonn of time left. It is the reality, and we have known it since the diagnosis at the 20 week scan. She is going to Nursery as much as she can but it really takes it our of her. We are trying to give her as normal life as possible and not let her diagnosis become who she is.
The yellow Spurs shirt is the first proper shirt she has as she is small for her age, she loves it and knows its *Tokkenham Hockspurs* and Daddy loves them. I want to try to get her up to the Lane as I know she would love it. She gets to stay up and watch the evening games, but in reality she is asleep before they start.
We were hoping she would be older before these things happened but her heart function has always been moderate at best and her sats now sit at around 76 as normal. We are optimists though and I know she will pull through,
That is an amazing thing to offer =)Please message me your address so I can buy her some stuff from the spurs store. It's absolutely heart breaking hearing this so I can't imagine how you feel, stay strong for her mate.
That is an amazing thing to offer =)
This was Mollie after her first life saving heart op
And this the other day after Nursery.
View attachment 93158
She is my absolute hero.
Poor baby. I hope she gets a heart soon, though even in saying that, I feel sad as that means another child has died. It's so cruel that she has to suffer like this, but it sounds like you are wonderful parents, doing everything you can for her. It's great that she is able to enjoy doing some things at least, but it must be horrible for her to not be able to do as much as her brother. Sending virtual hugs to you all.Unfortunately she is in the beginning stages of heart failure. She also is having bouts of hypoglycaemia which is tied to the heart failure (they think).
She is under GOSH and is on the heart transplant list.
She lives life to the fullest she can manage, by 17:00 or so she is done for the day. she gets really frustrated that she cant keep up with not only her peers, but her Brother who is 2 years younger than her. She knows she has a *poorly* heart but doesnt understand what that means.
Life is incredibly hard for both us and her right now, she cant regulate her own temperature, so we have to check on her every couple of hours overnight during cold snaps or heat waves, its a case of layers, so clothes on and off rather than upping the heating or directing fans at her, add in the bouts of Hypos its currently checking every 90 mins that her Glucose levels are ok, we are waiting for a decision on what the the Cardiac boffs want to do about the latest symptom.
With a heart her future is mostly secure, without one we dont have a tonn of time left. It is the reality, and we have known it since the diagnosis at the 20 week scan. She is going to Nursery as much as she can but it really takes it our of her. We are trying to give her as normal life as possible and not let her diagnosis become who she is.
The yellow Spurs shirt is the first proper shirt she has as she is small for her age, she loves it and knows its *Tokkenham Hockspurs* and Daddy loves them. I want to try to get her up to the Lane as I know she would love it. She gets to stay up and watch the evening games, but in reality she is asleep before they start.
We were hoping she would be older before these things happened but her heart function has always been moderate at best and her sats now sit at around 76 as normal. We are optimists though and I know she will pull through,