You never forget the joy your first baby brings. My husband and I were not only overjoyed but also never took for granted how lucky we were to have a healthy baby boy, Rex.
I look back now and cherish those first eight months of Rex’s life when we thought everything was ok – Rex was diagnosed with mitochondrial disease (mito) at eight months of age. This is when our mito journey began.
We were told the worst possible news; that our beautiful baby boy might not make it to his first birthday, and that given it was a maternally inherited mutation (Leigh syndrome), I may pass it onto to any future children.
The level of love, anguish, moments of joy and depths of sorrow that a parent feels when a child is diagnosed with a life limiting illness is something that is difficult to totally understand until you have lived it.
But we are extremely happy that Rex has proven everyone wrong!
Rex is now approaching his eighth birthday, and through chorionic villus sampling, a prenatal test used to detect birth defects and genetic diseases, Rex has two healthy siblings, Ted and Millie.
Whilst Rex has significant disability and some developmental delay – he is unable to walk and talk, requires ongoing assistance with ambulation, dressing, feeding, toileting – he continually surprises us, against all odds, with his increasing levels of comprehension. Rex now uses his communication device to communicate and access the school curriculum.
Rex attends school when he can and is learning to read and count. He has been blessed with an amazing teacher and teacher’s aides who have played a significant role in his increased development. We also have a great team of speech therapists, occupational therapists and physiotherapists who help guide and manage this development
We are seeing more and more of Rex’s personality shining through, including some cheekiness – something I never thought I would ever see.
Needless to say, I am kept busy managing therapies, vitamin cocktails, equipment and everything else to ensure Rex reaches his full potential.
I am often told, “I don’t know how you do it. This makes me reflect that most of us will always try to protect those we love, all the more when you have a child with a high level of needs. Perhaps we can do so because deep down, we never really give up hope.
I believe also that children give you a strength you never knew you had. You will never give up striving to ensure that they have all they require to help make their lives a little easier or are given an opportunity to participate and be included – another testimony to the enormous self-sacrificing power of parental love.
I have learnt that children who have an illness can develop a deep, unknowable wisdom far beyond their years. I sometimes think that Rex’s laughter, hanging on to life for longer than was ever expected and continually pushing forward are his own gifts to his family, who he loves and who love him so very much.
We do not know what tomorrow will bring but what we do know is that we are blessed to have our beautiful family. Rex is a wonderful son and brother to his siblings. He teaches us patience, persistence, bravery, acceptance and the ability to find happiness no matter how challenging things might be.
Knowing that there are people who care and who want to help, brings us extreme comfort and makes the journey considerably easier.
- Liza De Martin–Philp and Cameron Philp
The proud parents of our brave Rex and his loving siblings, Ted and Millie.