My journey started on the 5^th Feb 2007, had a good pregnancy, no problems, birth was fine, but Tierney was different.

I couldn’t put my finger on it but there was something. The following weeks there were problems with swallowing feeds, I tried everything buying bottles, different teats, you name it I tried it! So, decided to go to the doctor to be honest I felt a bit like a first-time mum who was unsure and looking for guidance. But instantly she understood and said I am making an appointment to see a neurologist and told me to sit tight, 2 days later an emergency appointment came through for the following Monday. I was apprehensive but just wanted to know what was going on. 11:15am in my own happy bubble this consultant called me in and started talking in a manner that I just could not understand, words that meant nothing to me, words I have never even heard of, let alone know what they meant. I walked out with my brain ticking over with these words. And a leaflet with a few helpline numbers on. A week later I rang made another appointment to see the same consultant but this time I was armed with questions, a note pad and pen, I told him I never understood what he previously told me and asked him to explain it over and over until I understood that my beautiful little girl would not be able to walk, talk, communicate with people, and life expectancy was grim. From that appointment it became a whirlwind of appointments, genetic testing, was transferred from Hospital to Hospital, then to a paediatric Doctor. Our life became overrun with appointments, and of course you attend them all and become more deflated on what “their” thoughts are on your Childs condition, when in fact they knew very little and just gave the worst possible scenario. And so, it became a nightmare as I was told that my daughter would pass away in her sleep and would not see her 2^nd birthday.

Every night I was afraid to wake up thinking that I would be looking into a cot and my little girl no longer with me. It was the most stressful time in my life, I could not look forward to anything, nor could I plan anything. It was soul destroying.

Advocating for Tierney

After Tierneys 3^rd birthday, I grew a pair, I challenged every decision, every medication, every Consultant that had an opinion with what was best for my daughter. I became her voice, her eyes and ears, if I didn’t like something or didn’t agree I would question them. Tierney was eventually Diagnosed with Pontocerebellar Hypoplasia Type 2 (PCH) for short.

With a diagnosis, things became easier… until I googled it. Biggest mistake ever! My world crumbled before me the information was bleak to say the very least, but at this point, my daughter was 1 in 13 worldwide with her condition. I decided never to google again with a health-related issue. Instead I tried to research, I made telephone calls, eventually found a group with children exactly the same as mine, there was hope! I made contact via email, it was so nice to speak to someone that got exactly what you were going through, these people are still so very important in my life today. Tierney also has Microcephaly, Epilepsy, Global developmental delay, Cerebral Palsy, sight impairment and Scoliosis of the spine, along with being Tube fed due to an unsafe swallow. Tierney went on to see her 5^th, 6^th, 7^th birthdays.

Tierney’s life now

Tierney is now 13 years old and attends a special needs School for children with PMLD. Finally, there is acceptance, there is positivity and most of all my daughter is happy and healthy, she uses an I gaze to communicate, she loves to play music on her iPad, loves to swim, loves to be in the company of other people. Don’t get me wrong its not been an easy journey, and you have to fight for everything. There have been times where we were Blue lighted to Hospital, the fear and panic inside of you not knowing it this is it, but on the outside, you are Calm and praying that again this warrior will fight yet another infection, recover quickly from yet another operation. But it’s the most humbling experience, as you receive so much back in return. And the hard-long days are worth it, just to see that smile, or hear that hearty dirty laugh. Your life will surely be changed for the better.

Tracy’s advice

Make sure you have people to talk to, request counselling if you think it will help, or if it’s the only chance you will get to speak to someone about your feelings and fears, never be afraid to ask for help. Join Online groups with likeminded parents who are going through the same journey as you. Request for a Child with Disabilities social worker and if you don’t get on with that social worker tell them and request a change, as it’s hard enough and you need someone on your side.