Ivy Gage

(Diagnosed with Mitochondria Cytopathy in Oct 2007)

Ivy was born on 23 December 2006 just in time for Christmas! She was a perfectly normal beautiful baby girl/sister.

Ivy reached all the mile stones that people seem to obsess about, holding her head high, smiling, laughing and fully taking part in life.

It was about 4 months when things started to go horribly wrong after she suffered a pretty bad case of chicken pox. Ivy began to loose weight very quickly and was hospitalised until she started gaining weight by using special formula milk. Over the next couple of months she was gaining weight nicely but began to loose the ability to sit, smile and support her head. Consultants told us that Ivy’s ‘failure to thrive’ meant that she had very little energy and in time she would be back on track. This sounded great news and we went away happy and reassured. It wasn’t until Ivy started to loose the ability to watch and follow you with her eyes that we new something was very wrong, it was though Ivy was sinking into herself and nobody else could see it or help us pull her back.

I remember it was a Monday morning we decided to give Great Ormond Street Hospital a call and to take Ivy in to see a private paediatrician. We were seen later that afternoon. The consultant took one look at Ivy and basically told us that her brain was not connecting with her body. He used the analogy that life for Ivy was like watching a Russian film, her brain can’t make sense of what she sees and has lost interest in her surrounding and was closing down. The world around us seem to stop, we were in the middle of London and I fell to my knees while Mark broke down clutching Ivy, they were wrong they must be!

The GOSH consultant wrote to our local hospital which finally made them wake up! Ivy was nine months when they sent us to Evelina Children’s hospital for a feeding clinic to just find out why she wouldn’t eat solids. A neurologist happened to be at the meeting and told us we were not going home. Ivy needed immediate attention. We still had absolutely no idea what was wrong with her and nothing in the world can prepare you for being told she was going to die and may not make it through the night.

After a long six months Ivy was diagnosed with a very rare condition called mitochondrial disease following numerous tests including a muscle biopsy and lumbar puncture. We were told that Mitochondria cells are like power stations in our bodies, supplying the energy every cell needs to function. If our cells don’t have energy, then the tissues or organs that the cells are made up of do not work properly.

The commonest parts of the body affected are those that have the highest energy demands; brain, muscle, liver, heart and kidney. And in Ivy’s case it is her brain.

The condition is hard to diagnose and sadly there is no cure!

I think many of us take for granted that when you have a baby it will smile, crawl, walk, talk etc. Ivy smiled again for the first time when she had just turned two. 

You remember these major special events so clearly - we had rushed into hospital on Boxing Day with a very sick girl and on New Years Eve she smiled for the first time in two years and we all cried, it was an absolute miracle!  Up until then Ivy did practically nothing, she was unable to move, eat or even cry, but now she has the most infections giggles you've ever heard, she is able to lift her arms and open her hands to feel and accept things, kick her legs with excitement and is fantastic at crying especially during the night. Ivy has just celebrated her 4th birthday and Christmas!

Ivy is now full time at Willow Dean School and she has a brilliant time working with brilliant teachers. Every day is filled with activities including art, cooking, swimming and music therapy. Ivy has exceeded all the consultants’ expectation as she is now able to hold up her head and while fully supported in a chair or standing frame she is able to reach out for toys and frantically tap a keyboard while laughing and squealing with delight.

Our family life is up and down all the time as sadly we have to live through the incredible pain and upset when Ivy becomes ill.  When she is ill it's a very sharp reminder of how precious life is, as she can become very very poorly and the relentless hospital stays can bring the whole family down to very testing levels!

Ivy has opened our eyes to a parallel universe of disabled people that we never knew existed and it's amazing! We have never met so many people who actually care, understand and want to help. We do make the most of the help that is available particularly from Demelza the children’s hospice. Demelza has played a big part in helping us cope and if we need any help or rest they are able to support us and for that we owe them a big thanks! But at the same time we are a proud family and like to cope on our own as much as we can.

Ivy has two extremely protective and loving sisters, Maya who is 7 and Willow nearly 2. If you were to ask Maya what its like living with Ivy she would probably look at you in a confused way thinking what a daft question and would answer 'she's my sister and I love her even though she has got a tube in her tummy'. Despite all her problems Ivy is really easy going, she just loves being cuddled and is really content being involved in all the crazy antics of normal family life. Ivy is just Ivy and all those who know her just love her as Ivy.

Mark and Ruth