In Loving Memory of
Lacey Pearl Leggett
November 22, 2011 - February 14, 2014
Lacey Leggett died at the age of just 2 and received support from Hampshire based children's hospice Naomi House after she was diagnosed
with a rare condition.
Mitochondrial TK2 cell depletion is an extremely rare syndrome that affects tissue found in the muscle, liver or
both the muscle and brain, respectively.
There is currently no curative treatment for any form of the illness and is typically fatal in the youngsters.
For Lacey, it didn't present itself until she was 6 months old and she spent her 1st birthday, Christmas and New Year in hospital.
Over time she lost the ability to move, eat and talk -
it took specialists over a year to diagnose the condition.
Mitochondrial is more common than childhood cancer, yet we know very little about this disease.
There is no cure, no treatment no answers.
I wonder what you are doing.....
I wonder how you are....
I wonder if you are happy dancing with the stars....
I will love you forever no matter where you are....
I wonder if your happy dancing with the stars...
These four special gifts for Angel Lacey are from my friend Marie.
You can visit her website for her son Rob here ~ Rob Northrop's Site.
My girl Lacey loving her time at Naomi House.
Lacey loved the swing at Naomi House!
We Do Not Need A Special Day
We do not need a special day
To bring you to our minds
The days we do not think of you
Are very hard to find
Each morning when we awake
We know that you are gone
And no one knows the heartache
As we try to carry on
Our hearts still ache with sadness
And secret tears still flow
What it meant to lose you
No one will ever know
Our thoughts are always with you
Your place no one can fill
In life we loved you dearly
In death we love you still
There will always be a heartache
And often a silent tear
But always a precious memory
Of the days when you were here
If tears could build a staircase
And heartaches make a lane
We'd walk the path to Heaven
And bring you home again
We hold you close, within our hearts
And there you will remain
To walk with us throughout our lives
Until we meet again
Our family chain is broken now
An nothing seems the same
But as God calls us one by one
The chain will link again.
Written by Connie Dyer
How happy is our little bean in this photo!!!! Family day out at bird world, our first family picnic and a day of smiles... love you Lacey Lou Lou's!
Lacey ready for Halloween.
Loving daddy and loving art work.
God saw you getting tired and a cure was not to be
And he put his arms around you and whispered,
'Come To Me'
With tearful eyes we watched you and saw you pass away:
Although we loved you dearly,
we could not make you stay.
A Golden heart stopped beating as you took the offered rest.
It broke our hearts but proved to us
GOD only takes the best
How I miss my mummy and daughter cuddles, lacey loved cuddles yet it was so hard to cuddle her with everything else going on.
Give your little ones a squeeze today and tell them how much you love them.
Me and my girl, I find looking at photos so hard... What we had... What we went through...
What we've lost... What we will never have... my dream, my world, my everything...
On Valentine's Day of 2014 my beautiful baby girl could take no more. She looked into my eyes, and I knew she was telling me it was time...
time to stop fighting, time to be free of mitochondrial time to grow her angel wings. This day broke my heart forever. I miss my baby girl
more than anything in the world, yet I know she guides me and helps me along my daily path. I would give anything for one last cuddle,
kiss, smile, and to hear her voice. Time seems to be going so fast Lacey,
and I can't stand the idea of you being gone for one more day. I'm truly lost without you.
Shine bright my beautiful angel for mummy is thinking of you every day.
When you wonder the meaning of life and love
Know that I am with you,
close your eyes and feel me kissing you
in the gentle breeze across your cheek.
When you begin to doubt that you shall ever see me again
Quiet your mind and hear me,
I am in the whisper of the heavens
Speaking of your love.
When you lose your identity
When you question who you are and where you are going,
Open your heart and see me,
I am the twinkle in the stars smiling down upon you,
Lighting the path for your journey.
When you awaken each morning
Not remembering your dreams
But feeling content and serene
Know that I was with you
Filling your night with thoughts of me.
When you linger in the remnant pain
Wholeness seeming so unfamiliar
Think of me and know that I am with you,
touching you through the shared tears of a gentle friend,
easing the pain.
As the sunrise illuminates the desert sky
In the breathtaking glory, awaken your spirit.
Think of our time, all too brief, but ever brilliant
When you were certain of us, together
When you were certain of your destiny.
Know that God created that moment in time,
just for us
Dearest Mummy, I am with you always.
Lacey had Ellie Goulding's song "how long will I love you" played at her celebration of life. We have had this quote put up in the baby's nursery
so she knows her big sister loves her lots and will guide her through life, and she will never be alone.
Lacey Pearl's little sister Faith Pearl was born February 20, weighing 9 pounds.
Mom and Dad so proud with baby Faith Pearl.
The heartbroken dad of a young girl who died after suffering a rare genetic condition has taken to the skies to raise money in her honour.
Dominic Leggett, 31, of St Alphege Gardens, Andover, completed a 10,000ft skydive to raise thousands of pounds for Naomi House Children’s Hospice, where his daughter visited.
Lacey Pearl Leggett was only two years old when she died on February 14 this year after suffering from an extremely rare disease that causes progressive muscle weakness. Lacey was believed to be the only person in Europe suffering from the condition, known as mitochondrial depletion disease,
which left her needing round-the-clock ventilation.
Richard Dilworth, 30, whose partner has known Lacey’s mum Lisa for 11 years, also took on the daunting challenge
at Old Sarum Airfield, near Salisbury.
Between them Dominic and Richard raised more than £2,000 for the Sutton Scotney hospice, which provides care and support to children
with life-limiting and life-threatening illnesses.
Dominic said: “I’m honoured to support such a wonderful charity in memory of my beautiful daughter.
“Naomi House is an amazing place that makes dreams come true for seriously sick and lifelimited children and supports many families
who live in and around Andover.”
Richard, of Shipton Bellinger, who is scared of heights and had never been on a plane before, said: “I was prepared to conquer my fear
to raise money for such a worthwhile cause.
“It was an amazing day, I was honoured to have been part of it and I definitely want to do it again next year.”
Reprinted from the Tuesday 28th October 2014 issue of Andover Advertiser, by Jo Steele.
Some of Team Naomi at Go Skydive. Thank you all for your support!
Lacey had these lilies on her casket on the day of her celebration of life. We had them preserved and framed and collected them for her. I'm so pleased with them.
JOY IN HEAVEN
Listen...can you hear it?
A heavenly choir sings.
Another little angel
just got her set of wings.
There's joy and there is shouting
As she steps through heaven's gate.
They all lined up to greet her.
All the angels celebrate.
Her eyes are shining brightly
And a smile lights her face,
As she receives her halo
And takes her special place.
She's the smallest little angel
With the biggest kind of love.
She's wiser than an owl
And more peaceful than a dove.
And though there's joy in heaven,
There is sorrow down below.
broken hearts are crying
Since they had to let her go.
So she watches them from heaven
But she knows the time will come,
They will join their precious daughter
When their work on earth is done
~ Author Unknown
Lanterns for Lacey on her birthday...
To read more about this courageous little girl, click here ~Lacey's Fight.
A friend can hear a tear drop.
This webpage is created In Loving Memory of Lacey Pearl Leggetton May 10, 2015
Last updated: May 19, 2016
© 2015 - 2016
Maria's Tribute to Christopher
Thank you to my dear friend, Linda, Tina's mom, for helping me with this song -
Dancing in the Sky by Dani and Lizzy - for Angel Lacey's special web page!
Tina Marie's Memorial Page