Elsa was born in February 2020, and it was love at first sight. 

 She was perfect in every way. She passed her usual newborn checks, she was so happy and would smile and laugh at the slightest thing and for the next four months, she developed as expected. 

Her mother, Louise, had no idea that anything was wrong.

In June, she had a seizure, and she was rushed to hospital. She had another five seizures that day and she was admitted to High Dependency Unit. Elsa’s parents were there for about ten days, and they told them that she had epilepsy, but they did not yet know the cause and never would. 

 They were then discharged and given a strict regime of daily medications. We were frightened but would look at our smiley girl interacting with the world around us and thought that she would be one of the lucky ones who had a relatively normal life living with epilepsy. 

 Over the next six weeks, everything seemed relatively normal again. 

 They felt like luckiest people in the world.  

Then, Elsa started having more seizures and was admitted to hospital again and this was the beginning of the most traumatic period of our lives. Overnight, she went from our smiley happy baby to not being able to lift her own head up, staring at a wall for hours on end. She didn’t notice anything, hear anything or do anything. It was utterly heart-breaking. 

 Elsa was in and out of hospital constantly and her awareness did not improve. We were exhausted and horrified at what was happening and more frightened than I can put into words. Tom stayed positive and was convinced that everything was going to be okay. She was his perfect girl. 

 At nine months, our world changed forever when we received the results of genetic testing, and she had an extremely rare mutation in the GABRB3. Based on how severely affected she was already, doctors predicted that she would be profoundly disabled both physically and mentally and was unlikely to live longer than 18. We were living in a nightmare. 

 “But she is our world”

  Elsa makes babbling noises and tries so hard to use her hands, but she has global developmental delay; she still cannot hold her head up for more than a few seconds, she can’t roll, or hold herself up, and her life expectancy is so much shorter than the average person. 

 Over time we have come to accept the life she is going to have and the limitations she faces, we are still grieving really, and we could not imagine life without her. She is so loved, and we are so thankful for every day we get with her. 

 Elsa’s nurse suggested Zoë’s Place when Elsa was just over a year old. The word ‘hospice’ is so often associated with end-of-life care, and I was horrified. Not only that my daughter needed a hospice but also that we needed help looking after our child. I felt it would be seen as we were not coping, and we weren’t comfortable with anybody else looking after our daughter. 

 I was immediately surprised. The staff were so genuine and lovely; the entire place is set up to get the most out of the children and to make sure they have a wonderful time. 

 It is the best decision we could have made!  

 Zoë’s helps us all more than we can explain. Being a parent is hard anyway but when you throw in the additional needs Elsa has, it is mentally and physically exhausting. You are not only a parent but a carer 24/7 and we cannot switch off. We are always aware that the next seizure might put her in hospital, or the next tummy bug back in intensive care. 

Elsa regularly stays at Zoë’s Place and having a little bit of time knowing that she is being cared for so incredibly, gives you time to recharge and keep on being there 100% for Elsa. Which is what she needs and deserves. 

 She does Music, Animal and Rebound Therapy, plays in their Sensory Room and garden, does arts and crafts, listens to music and is given all the cuddles and attention she needs. She has the best time, and we can relax knowing that she is in such loving, caring hands. 

To watch the story of Elsa, please click here.