Rare Disease Day - 28th February 2015

Val’s Story (mum of Jodi Whitehouse)

Jodi Ann Unsworth. Born at  Liverpool  Women’s Hospital, 6th September 1980.

Jodi Ann Unsworth. Born at Liverpool Women’s Hospital, 6th September 1980.

The grief began with the words …… “It’s a girl!”……… gasp ….. emergency ….. (we mustn’t let the mother see her child yet) ….. door flies open ….. in rush about 8 people ….. I just lie there numb ….. no emotions ….. no joy ….. just have the knowledge that all is not well ….. oh god I want Joe ….. where is he ….. please get him ….. chaos in the room ….. only 2 people are calm – the Doctor methodically stitching me up ….. and me – the mother of this newly-born abnormal child ….. but what is this abnormality????

Forty-five minutes later …. through my wild thoughts, “Mrs Unsworth….you can hold your baby now but she has a slight birthmark, nothing to worry about … here she is… what are you going to call her?”

We named her JODI ANN – a longed-for firstborn child. A beautiful child. A child who looked the image of her father – my husband Joe. But an abnormal child. A child with a rare skin abnormality. A number of hours after her birth we discovered that this “slight birthmark” covered 80% of her body. The largest mark was on her trunk and was very dark and hairy. The skin on her back looked like a severe burn as it was sore and weeping; we were told it might never heal. I found it very distressing that for months I had to apply dressings to Jodi’s back, all the time wondering if I would have to do it for the rest of her life.

Jodi Ann UnsworthAt two weeks old we took Jodi for a second opinion, only to be told “she may live for a few days or until she is 70”. At that moment Joe and I realised that doctors were as much in the dark as we were. Nobody knew the name of this abnormality or whether there was anyone else in the world who had it. For almost a year we struggled along; I shed countless tears.

Diary entry 16th August 1981

My beautiful abnormal daughter is now nearly a year old – in 21 days we will be ‘celebrating’ a year of grief … Why me? Why is life so hard on people? Why is there so much suffering in life?

LIFE …. What is it all about? My life consists of a great many tedious things – nappies; dusting; washing; ironing; cooking – the list is endless … But the worst aspect of my life is the deep and never ending grief at having an abnormal child! Everywhere I turn the ‘abnormality’’ stares me in the face.

“Oh God, please cure my daughter – may she no longer be abnormal but normal. Please God, cure her.”

Two days after Jodi’s first birthday, another night of many tears disappeared into my past … but what had my tears achieved? Why did I weep for so long, well into the middle of the dark September night?

6th September 1980 - First Birthday

6th September 1980 – First Birthday

At first, my tears were tears of grief – like so many tears I had shed before. They were pouring down my face as thoughts whizzed through my head … my firstborn child is abnormal … my poor daughter will have to cope with this abnormality for the rest of her life … how will she face endless hospital visits and frequent operations … how will she survive at school when other children mock her … will she ever get married with such an abnormality … and why, why do I feel so responsible?

Then my tears turned into tears of self-pity … Why me? Why did I have to have an abnormal child? Why has God allowed this to happen to me … me of all people?

Why should our lives be so radically changed? Why has God singled us out to have grief and sorrow as a constant fact of our life? Why has she got this abnormality when I never drank, smoked or took medication of any sort during pregnancy and other women all around me do all three and have normal children? Why has this tragedy happened to us?

And so the tears continued to flow….

1981 – 1997

For Joe and I the first fifteen years of Jodi’s life were years of isolation and uncertainty, as so little was known about this rare abnormality. We also had to cope with medics seeming unsure what to do and a strong sense of Jodi being a ‘guinea pig’ whilst she endured 30 plus operations. Throughout these long, difficult and lonely years, our faith sustained and kept us as we clung to the God we love and who we knew had knit her together:

For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made…. My frame was not hidden from you, when I was being made in secret… Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me when as yet there was none of them.”
Psalm 139 verses 12-16

Val's Story

During Jodi’s early years, in the midst of my many tears, these words brought great comfort to me even though I could not understand why God would choose to create her this way. I knew that our God was a loving God – not a cruel God – and so deep down I did believe He not only had a good and wonderful plan for Jodi, but also a far greater purpose in mind beyond ourselves.

In 1995, when Jodi was 15, we met Dr. Atherton for the first time. Little did we realise that this was the start of God’s wider plan unfolding. At a consultation in 1997, Dr. Atherton asked Jodi if, with our help, she would consider starting a support group for those affected by Congenital Melanocytic Neavus. Without even pausing for thought, Jodi instantly said yes!

Caring Matter Now - Founded 1997

The Years That Followed:

“A picture paints a thousand words.”

THE YEARS THAT FOLLOWED:

Val's Story

So What do We Have To Celebrate?

In those dark early years of Jodi’s life I had so many questions but today, as I look back down the past 20 years, not only have I been given many answers to my endless questions, I also have SO much to celebrate:

  • What I saw as a tragedy for many years has proven to be an amazing blessing from God.
    He certainly had a plan and a purpose!
  • The opportunity and awesome privilege of establishing Caring Matters Now, which today supports families not just in the UK, but also across the world!
  • The phenomenal amount of money raised for Caring Matters Now, which funds the dedicated and tireless research of Dr. Kinsler and her team.

As I reflect on the years since Jodi was born, I am so thankful that no other family needs to face CMN alone. I am also overwhelmed as I never dreamt that in my lifetime the cause of CMN would be discovered – let alone the possibility of a cure! Yet in 2017 this is the incredible reality!

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