In memory of Aminah (10/09/10 - 30/01/2012) & Marwa Tariq (15/10/2017 - 05/10/2018)

By Misba Hussain

Our beautiful daughters are now angels. They lost their battle with Herlitz junctional epidermolysis bullosa. This is a message to them that our family wants to share...

When Aminah was born it was a confusing time. Everything we went through was a shock. When we saw Aminah in endless pain it was heart-breaking. Everything in our life changed.

EB is a condition that touches the whole family. Parents and siblings lives’ also transform. The hours taken to change dressings cloud over the rest of the day. It leaves you drained, emotionally and physically.

When Marwa was born six years later, we found she had the same condition. We knew what we would have to go through and how much pain she would be in during her short life. It was surreal that it all happened again, especially to see another child of ours go through the pain of blisters and bandages. 
We have three other girls so the past year has been very difficult for our other children to understand why Mummy and Daddy took so long dressing Marwa. This is when the Hospice Nurse and the Community Nurse coming to help us with Marwa's bath and dressings made a big difference to our family.

It was so difficult for them to understand why we had to hold you on pillows and couldn’t cuddle you both, let alone explaining to everyone why they could not touch you.

But we have so many memories of you, Aminah, lying on your play mat blowing raspberries at everyone and watching your favourite programme, In The Night Garden. You just loved Upsy Daisy and waved your hands when Makka Pakka came on the screen. You were obsessed with Mr Tumble.

Marwa, you were also very brave and we enjoyed so much time together. You enjoyed watching TV and smiled every time your sisters played around you. Just like your older sister Aminah, you also loved In The Night Garden and spent lots of time watching and loving each character. We took you to Blackpool beach and you had a wonderful time.

 I will love and miss you always. Be at peace, my babies.

We would like to say if there are other families in our position they are not alone. Asking for help can support people when facing a difficult time – even allowing a hospice to be involved as they can help a family open up to other support and work in conjunction with other specialist teams involved with the child which benefits the family as a whole.

As a family we would like to thank the Clinical Specialist Nurses at Birmingham Children’s Hospital, especially Dawn and Danielle. Dawn, you were with me for both babies and visited us every few weeks and helped us so very much, I will remember you always.

The staff at Forget Me Not Hospice were wonderful, especially Liz Lyles and Dr Catriona McKeating. They went above and beyond to support Marwa and her medical needs to help keep her as comfortable as possible in her short life. Our family would like to thank them immensely.

DEBRA, you really helped me to get the things I needed for my girls. Your website helped me to understand the condition and one day I hope there will be a treatment and a cure.