Fundraising for Alana’s Space

Help fund Alana's new space to include a wetroom and necessary equipment...

This is Alana’s story (Written by Alana's Mum, Kate):

In 2015 we were pregnant with our second child. Having not been able to find out the gender at the 20 week scan we paid for a private scan at 31 weeks. In that scan we found out she was a girl and it showed a large dark shadow in the brain and we were referred directly to a Foetal Assessment Clinic in a Dublin Maternity Hospital.

The team asked if I had fallen down stairs or had a car accident as it looked as if there was significant bleeding in the baby's brain. I had not experienced anything like that and had a healthy, happy pregnancy.

The following weeks I had an MRI to scan the baby's brain more closely and we were seen weekly. We were told that this baby had a devastating brain injury from what they could only conclude was a spontaneous haemorrhage in the brain which was leading to fluid build up which was in turn creating massive pressure on the brain and inhibiting it from growth in certain key areas.

We were told that she would be highly unlikely to survive delivery. We made choices to carry her to full term and make the safest option of delivery possible in order to give her as good a chance of life as possible.

She was delivered safely by elective section at 37 weeks. We baptised her in the hospital with all our families around us. We spent a week in hospital with all family members visiting to meet her and show her love and there was no expectation that we would leave hospital with a baby so we had not got anything ready at home.

We had prepared our 2 year old son for a short time with a baby sister. We called her Alana (which means little girl in Irish) and gave her the middle name Talitha, which is also little girl in Aramaic and is something Jesus said to a little girl in the bible, 'Little girl, get up' and she was raised from the dead.

Amazingly by the end of the first week she was alive and feeding well. Her head was beginning to swell and was very soft all over. We took her home but were told to expect her to die still and so nested with her every day, limiting who held her so that we would not regret a single minute with her.

She lived to one month old with a strong body and will to live and feed in every way except her increasingly growing and swelling head. This meant she had to have her first brain surgery. She was now diagnosed with hydrocephalus, water on the brain, which was building up in pressure and needed to be relieved via a brain shunt/drain in her head. This surgery was successful and her head began to reduce in size.

We then discovered that she had been having seizures during this time and that she was unable to see. Amazingly she is now 8 years old. She has had numerous further brain surgeries for her shunt and her severe seizures which have now been diagnosed as epilepsy. She is also cortically visually impaired, which means she cannot see anything due to the brain injury. She is unable to do anything for herself, though she does have full control of her limbs. She speaks very clearly, albeit not in direct or necessarily relatable conversations.

She takes multiple medications a day to manage these things and for many years took them well orally along with solid food. But in the last few years feeding and medicating her had become very difficult and was affecting her development, her stress levels (and ours) and her medications. So she had surgery to insert a PEG feeding tube last summer to give her food and medications consistently.

That has been very successful and effective. She is a happier child with regular food, her seizures are well managed with regular medication and improved nutrition. And she has grown. A lot.

That means she is no longer as easy to pick up like a baby. She is now a 25 kg 8 year old girl. We now need to manage lifting her differently and that means getting a hoist for her and a wetroom bathroom so she can be washed and go to the toilet.

We have planning permission for an extension to her bedroom to do both those things but the cost is much higher than we expected. We have only half the money for the build which was quoted at €110,000.

Any support you can offer will make a huge difference to Alana – thank you all so much.