Being diagnosed with a rare condition can be very overwhelming and life can look very different after your diagnosis. Lorraine shares how her and her family have adapted to life with Tyrosineamia Type 1.
My Little Tyrosinaemia Trooper – Adapting to Life with a Rare Metabolic Condition
“Those who don’t believe in magic will never find it.” Roald Dahl
“I can clearly remember the early days when Harry was very small. We left the hospital after several weeks to return home to start our “new normal” life. I was feeling so vulnerable and terrified as my security blanket, which was Temple Street Children’s Hospital, had now been removed and my husband and I were now the main carers for Harry.
My heart used to beat so fast in my chest with fear: fear of the unknown, fear of making a mistake, and fear because I doubted my ability as a mother. Harry had to be fed every three hours for nearly 18 months and given two separate bottles at each feed. Harry needed 14 bottles per day with various supplements added to certain bottles and he needed his medication morning and evening. It was a lot to deal with and it was a lot for a newborn baby. I can honestly say that it was completely mind boggling. I felt that I was thrown into a world of trying my best to look after a small baby with a rare medical condition with very little expertise and, to be honest, I felt completely exhausted and worn out but I knew that I had to dig deep for Harry’s sake, so that I could give him the best start possible in life.
I had great difficulty in accepting that Harry had this condition but once I realised that I had no choice but to accept it, things did get easier, as it was my approach towards his condition that I did have control over.
I truly believe that life throws challenges at us all the time and we can’t change what is thrown at us but we can change our way of thinking and our approach. It is better to put our energy into the things that we can control rather than the things that we can’t control.
I did find things very overwhelming for the first few years, but what helped me cope greatly was not thinking too much about the future and embracing each day. I found a great sense of relief when I would reflect on the day and smile to myself that I had managed to get through the day and look after Harry successfully. As a family, we very much live our lives day by day and this really helps us all, especially Harry. It makes me so proud when I now look at Harry and see how happy and healthy he is and, most importantly, that he is so accepting of his condition and doesn’t feel different in any way.
My husband and I have worked so hard as a couple to blend Harry’s condition into normal everyday life, so that our other boys don’t feel that they are missing out on our love and attention, and so that Harry feels included and doesn’t feel that his condition holds him back in any way. I believe that we are all perfectly imperfect and unique in our own special way, and Harry’s condition is part of his uniqueness.
If I could offer one piece of advice to any family starting their journey in life with a rare metabolic condition, I would say that it is completely normal to experience negative emotions about yourself and the cards that life has dealt to you, but things do get better and every cloud really does have a silver lining; sometimes, you have to look that little bit harder to find it.
Harry has brought so many wonderful gifts with him into our lives and despite the daily challenges of his Tyrosinaemia, the happiness that he has brought far outweighs the challenge.”
“Happiness is not something ready made. It comes from your own actions.” Dalai Lama
Thank you so much to Lorraine for sharing your story and some great advice on adapting to life with a rare metabolic condition. If you would like to share your story, please contact Maggie on firstname.lastname@example.org or 0845 241 2173.