Abby Byatt - Battens disease

We have been so very blessed since the original making of this go fundme in august 2023 to spend an extra 6months with our princess abby, everyone that loves abby has been so appreciative of this period of time we have been given with her although we are all well aware it was just borrowed time.

Since august abby stabilised to her new normal of very minimal response and became bed bound. 3 weeks ago abby began having a new type of seizure that is constant and untreatable for 7 days before being admitted to hospital again. Her admission meant she was loaded with medications and as that still did not break through the seizures it was deemed this is now her normal state of consciousness.

abby returned home to spend this final time with her family as she is now what the doctors say is “actively dying”. Abby has developed untreatable pneumonia and now a secondary infection known as sepsis. Abby also has regular coughing fits which are very distressing for her and greatly compromise her airway.

The stage abby has reached now has taken an immense toll on the family. The money originally raised is enough to cover the basic costs of funeral expenses and allowed dad some time off work to spend with his princess. Unfortunately now he has been forced to return to work. Mum has been working around the clock to help the support carers she has at home with abby as the care she requires has greatly increased to keep her as comfortable as possible in these final moments. The emotional impact of current circumstances is so horrific the family is just trying to take it day by day the best they can.

The family is and will be forever appreciative of donations that help ease pressures they feel in this horrific time. Any contribution will aid the family to grieve and spend this final chapter of abby’s life together.

*original post*

We are organising this fundraiser to hopefully relieve any pressure on what has become a very painful time for the family of Abby Byatt.

Our 6 year old Abby has two terminal diseases, a rare genetic condition called Battens disease and Hypomyelinating Leukodystrophy. A horrific and unfair disease, symptoms Abby developed are childhood dementia, loss of mobility and ability to swallow, non verbal and epilepsy. Sadly Abby’s battle since her diagnosis is coming to an end.

Mum and Dad also have three other children - one of which also battles the diagnosis of battens disease, so to think the family will need to go through this experience again is absolutely heart breaking.

Abby is such a bright little girl who has the most beautiful smile and a contagious laugh. She leaves a positive imprint on everyone that has been blessed to be apart of her short time here with us. Abby will leave us all with amazing memories of how she would love to dance and sing, she would giggle as she watches her siblings run around her and hang from her feeding chair. Special moments her family will hold on to forever. To see her in a state we know is not Abby is devastating and coming to terms that we do not have much longer with her is an overwhelming thought.

Although when diagnosed the family was aware the disease is terminal Abby’s recent deterioration came very quickly and as you can imagine no amount of preparation could ever be enough to the death of a child so young and bright.

All donations are deeply appreciated and we are grateful for all the support we have had throughout Abby’s journey and are so joyful for the times we’ve all been able to spend with one another.

follow the family’s story - https://www.facebook.com/profile.php?id=100076063214402&mibextid=LQQJ4d