Our Story

 

~ We are the Hover family ~

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We, Lisa and Andy, are the parents of four beautiful children – Aiden (12), Annabelle (11), Georgie (5) and Robbie (4)…and our family have had our hearts broken twice.

In August 2016, after losing her sight rapidly over the course of three years, Annabelle was diagnosed with an extremely rare condition – CLN3 Juvenile Batten Disease. This is a form of rare inherited disorders (a lysosomal storage disorder) affecting the nervous system. Beginning in childhood, it causes rapid vision loss, seizures, thinking difficulties, loss of speech, loss of movement and premature death.

There are currently no cures or effective treatments for CLN3.

Annabelle has lost her sight completely, she is showing signs of dementia, she gets tired very quickly and has behaviour problems. We have been advised that Annabelle will experience seizures any day and that we probably have 10 more years with her at the most. We were absolutely devastated by this. In January 2017, Robbie (aged 4) was also diagnosed with Juvenile Batten Disease.

We now face the reality that two of our beautiful children will die in the next 10-15 years, and will most likely have to arrange and attend their funerals before our own – something no parent should have to do. But we will stay strong, and we will all fight. Our family quest is to give all the children the best possible life, to focus on fundraising and support research in medicines that can help them and other children facing this disease.

What impact has Batten Disease had on the children and family?

We worry about the impact on our other children. We have needed to give a lot of support and time to Annabelle in the last years and this will only increase. It is challenging to spread ourselves evenly across our children, which does impact on Aiden and Georgina. Georgie is at a relatively young age and, although we have told her about Annabelle, she is too young to fully understand. Aiden, on the other hand, has been very upset; at times it is clear that he is struggling to deal with things. In his own words, “I have lost my sister, due to the loss of her eyesight and not being able to play together the same way we did when we were younger”. He is now devastated to know that he will lose his little brother, who he waited 8 years for.
As parents, we struggle on as best as we can – we have no choice. There are definitely moments when we question why? Why us? Why them? How can we cope? What do we do? There are many moments when we just want to cry, and we do. But we look at our kids, brush ourselves down and get on with things.
We are determined to fight this disease –sitting back and just watching our kids is an option but not one for us. We will give our kids the best life possible and give them the best experiences to remember. This disease does start to affect memory, but long term memory is retained so we must fill those memory boxes with as many good times as we can. We will manage the disabilities as they arise and bring in medical care as it is needed. We will fight for treatments and do whatever we can to advance research and trials of possible cures.

Why Batten Fighters Forever?

Annabelle chose the name Batten Fighters Forever because its abbreviation is BFF, which also stands for Best Friends Forever. This very much captures her brave spirit and the need for us to stick together in the fight ahead. We will use BFF to raise awareness of the disease and to raise funds towards research. We know there will be challenges ahead, but with the support of our BFFs we will get though them, and pray that a treatment – or better still, a cure – is on the horizon.