Other: Melissa, Theo and Xander

Melissa, mum to Theo, six and Xander, five, shares their story.

Published: February 2015 (children aged 5 years and 6 years).
Melissa, Theo and Xander

When the impossible happened

When I was 16 I was told I could not have children due to severe endometriosis and polycystic ovarian syndrome. My world fell apart. I gave up hope in having the family I always dreamt of and focused on getting my health under control. I was also diagnosed with narcolepsy with cataplexy, a chronic sleep neurological condition. I could no longer work and felt very alone. When I began to feeling very different, and lost a stone with sickness, I assumed it was down to my condition. It wasn't until I was three months pregnant that I realised my dreams had come true. I was going to be a mummy. Theo was born March 2008. At first everything was fine. I quickly got the hang of things and being a mummy was like second nature.

Theo’s diagnosis

Melissa and Theo
As Theo grew, I noticed he didn't behave quite like other babies. He didn't like to be held, didn't smile, had trouble feeding and hated water, bubbles, messy foods and play. He began to walk at the age of two with a lot of help from occupational therapists and physical therapists. He had speech therapy and attended a feeding therapist to help him gain weight and learn to eat. Things were tough. I wanted to be happy and enjoy my boy, but he seemed so disconnected from reality. And from me. My heart broke. Theo was diagnosed with Tourette’s syndrome, sensory processing disorder, a brain cyst and Autism spectrum disorders with complex mental health needs and seizures. We have spent a lot of time in therapy and hospital. He continues to struggle with everyday living. His behaviour can be challenging; he self-harms and is very detached and can be dangerous.  In the past he has attempted to jump from first floor windowsills. 
He is my world and through all of this I'm his advocate. He has taught me so much."

Xander arrives

Melissa and Xander
In 2009 I was blessed to have my second baby boy, Xander. I was so pleased to have my beautiful baby, but I was apprehensive and anxious. My worry spiralled out of control.  I was convinced something was wrong. I told myself 'what mother thinks that about their beautiful baby'. I hated myself for not being enjoy this special time. I pushed my partner away, and friends and family stopped calling. Xander could not suck a bottle, he could not move at all. Like a ragdoll. He had four ambulance admissions to ICU with respiratory distress before he was four months old. During this time he was diagnosed with congenital torticollis, which meant he held his head to one side and had difficulty turning it. He required extensive occupational therapy and physiotherapy. His therapists always exchanged worrying looks and I knew they could see it too. I wasn't a bad mother for thinking my boy was not ok, and I finally gained some trust in the health system that previously refused to listen to my worries. By the age of nine months Xander still could not support his own head and body and still ate pureed food. He did not talk. By the age of one he had not changed apart from being able to flap his hands and he never slept. From the day I brought him home from hospital, he never slept at night. He started on melatonin and chloral hydrate to sedate him at night.
Theo and Xander
He could not chew or swallow properly, and was diagnosed with a high arched palate. He was also diagnosed with chronic asthma and had to take steroids and inhalers every day. Things where hard.  Both boys in special therapy, and myself in and out of hospital with health problems. I developed intracranial hypertension, requiring regular and often long hospital stays. The neurologist said that it was because of stress.

A turning point

Theo and Xander
Both boys developed seizures at this time too. What else would go wrong? My world fell apart in 2010. I lost my partner. My mother and father separated, my boys and myself where in desperate need of help and no one was listening. After being rushed to hospital with neurological complications, I was diagnosed with possible multiple sclerosis and a brain cyst.  
I realised that I had to get strong. Enough was enough. My boys needed me, and I was their only hope so I picked myself up and decided to fight."

Xander’s diagnosis

In the summer of 2012 I finally fought hard enough to get Xander an MRI brain scan. Nobody believed me when I said there was something wrong. Social services and health visitors made regular visits to check I was of sound mind. I felt defeated, but I pushed on. Three weeks after Xander’s MRI I was out shopping with my mum when my phone rang. It was the doctor that had finally given in to the MRI. He asked me to sit down as he had some news for me and felt he should ring me himself.  Xander’s scan showed he was missing an important part of the brain, the corpus callosum which connects the left and right sides of the brain. He also had a large brain cyst. My mother and I wept. We were told not to expect much. He may never walk talk, may need a feeding tube and if the cyst got too big he could end up losing the power in his left side. I was so angry. It took until my baby was three for them to finally listen. I knew it from the start, and now everyone else would too. I was not crazy or depressed, I was a mother… fighting for my son.

Xander’s progress

Xander is now five years old. Despite what I was told, I chose to not give up. I paid to get occupational therapy equipment, learnt makaton sign language, attended multidisciplinary clinics regularly, and by the age of four he was talking, toileting and walking. He still isn't steady or coordinated, has some speech difficulties and can't read or write yet.  He has incontinence and behavioural issues, his world is very different to ours, but I'm blessed to be able to share it. I have all the time in the world to help him. He mostly uses a wheelchair to get about, both boys have decreased muscle tone, hyper flexible joints and flat feet. Xander has also been diagnosed with a kidney disease and now has regular renal scans.

Looking to the future as a family

Theo and Xander
My two boys are happy, loving and caring and I couldn't have asked for more.  We have a long road ahead of us, the future is very uncertain, and we all have lifelong illnesses that will not get better or go away,  but we are strong and love will always get us through. Both my boys have taught me patience, sensitivity, they have thought me to never give up and that nothing should stop you from smiling. Anything is possible when you believe and most importantly mummies are always right!
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