Gemma's campaign for KRABBE UK
Tax deductible
*PLEASE READ & SHARE*
So while covid has been going on we have been living our own little nightmare. Nellie was took in to hospital by myself at the start of April following a seizure and stayed in for 3 weeks. Due to covid we were not allowed to swap or both be there at the same time meaning 3 weeks without Olivia seeing our baby.
After undergoing numerous testing (including CT scans, MRIs, EEGs, lumbar puncture, blood and urine and genetic testing) it turns out she has a very rare condition...Krabbe disease.
Krabbe disease is a genetic condition which affects roughly 1 in every 100,000 individuals. A baby will develop normally for the first few months of their life and start to show symptoms after (for us this was feeding difficulties and poor head control). This awful condition causes infants to decline and they rarely survive until the age of 2. For every child me and Olivia have theres is a 1 in 4 chance that they could have this.
We have been struggling to come to terms with the new Nellie, the Nellie that I brought home from the hospital was not what we were used to. She doesn’t wake up very much now and we haven’t seen her gorgeous smile or her little giggle since the day she went into hospital. She is now fed through a tube and has to be suctioned as she can’t clear her secretions and has an unsafe swallow. We’re drawing up so many medicines daily and we have slowly adjusted to our new routine. We will never forget the happy little princess we had before this condition took over. It’s hard to grieve for a child you still have, we already feel like we’ve lost a massive part of our little girl. However she is still our amazing, gorgeous baby, our little fighter and we will do anything we can to make sure she is loved, cared for and comfortable.
We are embracing Nellie now for who she is and the time we have left with her. The support from our family and friends has been amazing even though most of them can’t see us properly at the moment. We’ve also found great comfort in talking to other parents in the same situation as us who we were put in touch with through the charity Krabbe UK. There are currently only 8 children at this moment in time with this condition, Nellie being one of them.
Krabbe UK is a small charity who support others in the same situation as us. They have helped massively by pointing us in the right direction to be able to get equipment for Nellie to make her more comfortable which is funded for by charities that they work closely with. We would be grateful if anyone who is looking to fundraise in the future would please consider this charity. It may be small but it makes a huge difference to families like ourselves!
Our goal now is to raise awareness and to help others who are currently in the same or similar positions. Krabbe disease is not routinely screened for here in the UK, in the USA there are only a few states that actively screen. This needs to change, and the more we speak about it, the more aware people are then hopefully this will happen in the future because no parent should have to go through something like this, but until then if they do, we’re here...and Krabbe UK is here, and the other amazing parents who have helped us.
So while covid has been going on we have been living our own little nightmare. Nellie was took in to hospital by myself at the start of April following a seizure and stayed in for 3 weeks. Due to covid we were not allowed to swap or both be there at the same time meaning 3 weeks without Olivia seeing our baby.
After undergoing numerous testing (including CT scans, MRIs, EEGs, lumbar puncture, blood and urine and genetic testing) it turns out she has a very rare condition...Krabbe disease.
Krabbe disease is a genetic condition which affects roughly 1 in every 100,000 individuals. A baby will develop normally for the first few months of their life and start to show symptoms after (for us this was feeding difficulties and poor head control). This awful condition causes infants to decline and they rarely survive until the age of 2. For every child me and Olivia have theres is a 1 in 4 chance that they could have this.
We have been struggling to come to terms with the new Nellie, the Nellie that I brought home from the hospital was not what we were used to. She doesn’t wake up very much now and we haven’t seen her gorgeous smile or her little giggle since the day she went into hospital. She is now fed through a tube and has to be suctioned as she can’t clear her secretions and has an unsafe swallow. We’re drawing up so many medicines daily and we have slowly adjusted to our new routine. We will never forget the happy little princess we had before this condition took over. It’s hard to grieve for a child you still have, we already feel like we’ve lost a massive part of our little girl. However she is still our amazing, gorgeous baby, our little fighter and we will do anything we can to make sure she is loved, cared for and comfortable.
We are embracing Nellie now for who she is and the time we have left with her. The support from our family and friends has been amazing even though most of them can’t see us properly at the moment. We’ve also found great comfort in talking to other parents in the same situation as us who we were put in touch with through the charity Krabbe UK. There are currently only 8 children at this moment in time with this condition, Nellie being one of them.
Krabbe UK is a small charity who support others in the same situation as us. They have helped massively by pointing us in the right direction to be able to get equipment for Nellie to make her more comfortable which is funded for by charities that they work closely with. We would be grateful if anyone who is looking to fundraise in the future would please consider this charity. It may be small but it makes a huge difference to families like ourselves!
Our goal now is to raise awareness and to help others who are currently in the same or similar positions. Krabbe disease is not routinely screened for here in the UK, in the USA there are only a few states that actively screen. This needs to change, and the more we speak about it, the more aware people are then hopefully this will happen in the future because no parent should have to go through something like this, but until then if they do, we’re here...and Krabbe UK is here, and the other amazing parents who have helped us.
Organiser
Gemma Hardy
Organiser
England
KRABBE UK
Registered charity
Donations eligible for Gift Aid.
