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Jacob Nicholas Wright

Age: 2

Date of Birth: 6/12/2010
Date of Passing: 19/04/2012

Nickname: Jacob
Birthplace: Addenbrookes Hospital, Cambridge, England
Place of Death: Addenbrookes Hospital, Cambridge, England
Cause of Death: Mitochondrial Disease, Leigh's Disease

Jacob Nicholas Wright was born on the 6th December 2010. He was the most beautiful boy anyone had ever seen. Jacob experienced many health problems in his life and after 5 months of tests and trips to Hospital in February 2012 the Doctor's told us he had Leigh's Disease.

Leigh’s Disease is a little know Mitochondrial Disease, which mean the Mitochondria or Batteries in Jacob's brain cells were not working. We were told he would not have long to live, as ordinarily from diagnosis as an infant a life span can be weeks or months.

Jacob died on the 20th April 2012 peacefully in his mummy's arms with his daddy holding his hand; his paternal grandma and maternal grandparents were also present.

Jacob was extraordinary, and his mummy, daddy and whole family are grateful everyday for having him in their lives. He taught so many people so much and was the bravest, kindest, snuggleyest little boy you could ever meet.

Team Jacum is made up of the family, friends and supporters of an incredible little boy, Jacob Wright, who grew his Angel wings on the 20th April 2012. He had a condition called Leigh's which is a Mitochondrial Disease. They’ve called themselves ‘Team Jacum’ as Hallie, Jacob's cousin was unable to say Jacob and could only say Jacum.

www.facebook.com/pages/Team-Jacum/325985957510326

The Lily Foundation helped us in more ways than I could have imagined. We have amazing memories from our trip to Center Parcs. Liz (Of the Lily Foundation) has been a source of information, support and a link to other Mito Angel mummy's. EACH supported through the latter days and assisted with organizing the funeral and goodbyes. Prior to this Brainwave helped Jacob use his hands and arms again, this was amazing. The Sick Childrens Trust gave us accommodation with a direct phone line to the PICU bed Jacob was at; it was a one-minute walk away. We are not sure we would not be where we are today without them. Please support them to help children and parents like us, and one day find a cure for this devastating disease.

Team Jacum www.facebook.com/pages/Team-Jacum/325985957510326
The Lily Foundation http://www.thelilyfoundation.org.uk/
Brainwave http://www.brainwave.org.uk/
The Sick Children’s Trust http://www.sickchildrenstrust.org/index.html
East Anglian Children's Hospices (EACH) http://www.each.org.uk/
CAMSIGHT http://www.camsight.org.uk/

We also recently begun to support http://www.justgiving.com/anna-lewis-bff the family of who lost a beautiful little baby called Anna to Mitochondrial disease and are engaged in funding research.

Our aims are to raise awareness of mitochondrial disease and contribute to the quest for a cure; and
To support palliative care of children across the country, and the organizations that help and support children and their families with specialist needs. Mitochondrial disease takes more children than childhood cancer and is thought to be intrinsically linked to the following conditions, disfunction's and diseases:
Diabetes, blindness, Alzheimer's, ALS (Motor Neurone Disease), Parkinsons, Autism, Cancer, Chronic Fatigue Syndrome, Infertility.

“Team Jacum is determined to ensure Jacobs legacy is one of positivity, hope, love and that the super gorgeous Jacob Bear is never forgotten”.

Claire, Bob and Angel Jacob Bear xxxxxxxxx

www.facebook.com/pages/Team-Jacum/325985957510326
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Cherished Thoughts

Cherished thoughts

From the offset Jacob filled our lives with an insurmountable feeling of joy and pride.

Even when times were tough for our little warrior he somehow managed to work through it, never griping or complaining.

Jacob could communicate with his face and eyes, it was deemed the ultimate honour when he raised an eyebrow at a medical practitioner. It was such a powerful asset of Jacobs and even during the darkest days he could reassure his Mum and Dad.

Some memories that have become ingrained:
Jacob having tickle sticks with granddad Brian in Torquay, Devon – such a cherished day.
Jacob sitting in Tesco café highchair trying to eat a sandwich with Grandma Liz and Mum – he loved it.
Eating clotted cream ice cream in Devon with Dad – I couldn’t feed him quick enough.
Bath times with dad every night – it was our comedy hour.
Breakfast with mum every morning – Jacobs’s favorite and most alert time of day.
Afternoon cuddles with Mum post lunch – priceless.
Jacob used to sleep all the way through under ones group – but woke up to the songs at the end!
Granddad Dave cuddling Jacob in the kitchen at home and Jacob snoozing away, feeling snug and secure.



Added on Sat 20th Apr 2013 11:21am

Claire Wright


Location: Sutton, Ely uk
Member since: 20/04/2013
On your 1st angelversary, love Mummy ****

You were a gift sent straight from Heaven.
Given to us from God above.
We didn't know how much you would teach us
About the meaning of true love...
For true love sometimes means letting go
Of someone precious and dear.
That is what we were forced to do...
Although we wanted to keep you here!!!
However, this is quite a selfish wish.
One we know we should ignore...
But, sweet Jacob we truly do believe
That God must have needed you more...
We know you are an Angel now,
Full of wisdom and love...
Watching over those of us who love you
From the shining stars above.
We miss you more than you can know.
You will never be replaced...
In our hearts and memories forever,
Will be your sweet and innocent sleeping face.
Added on Mon 22nd Apr 2013 2:15pm

Liz Doe


Member since: 20/04/2013
One whole year

One whole year
Miss you so much
One whole year
Without your touch
One whole year
Without our hugs
One whole year
Tears come in floods
One whole year
Love your mum and dad
One whole year
We all feel so sad
One whole year
You make us strong
One whole year
We will go on

Dear Jacob Bear, we miss you so
Dear Jacob Bear, we are apart
But Jacob Bear, you hold my heart.







One whole year

One whole year
Miss you so much
One whole year
Without your touch
One whole year
Without our hugs
One whole year
Tears come in floods
One whole year
Love your mum and dad
One whole year
We all feel so sad
One whole year
You make us strong
One whole year
We will go on

Dear Jacob Bear, we miss you so
Dear Jacob Bear, we are apart
But Jacob Bear, you hold my heart.






One whole year
We miss you so much
One whole year
Without your touch
One whole year
Without our hugs
One whole year
Tears come in floods
One whole year
Love your mum and dad
One whole year
We all feel so sad
One whole year
You make us strong
One whole year
We will go on

Dear Jacob Bear, we miss you so
Dear Jacob Bear, we are apart,
But Jacob Bear, you hold my heart.

With love from your grandma who misses your dribble and eyebrow smiles more than anyone knows xxxxxx
Added on Wed 24th Apr 2013 6:54pm

Claire Wright


Member since: 13/04/2013
It seems the further away my little boys departing gets the stronger the need to be with him is. I miss and love him dearly and give my thanks for being able to keep his precious memories alive on this site. x
Added on Wed 24th Apr 2013 9:57pm

Claire Wright


Location: Sutton, Ely uk
Member since: 20/04/2013

by Nancy Tillman


On the night you were born,
The moon smiled with such wonder
That the stars peeked in to see you
And the night wind whispered,
“Life will never be the same.”
Because there had never been anyone like you…ever in the world.
So enchanted with you were the wind and the rain
That they whispered the sound of your wonderful name.
It sailed through the farmland
High on the breeze…
Over the ocean…
And through the trees…
Until everyone heard it
And everyone knew
Of the one and only ever you.
Not once had there been such eyes,
Such a nose,
Such silly, wiggly, wonderful toes.
When the polar bears heard,
They danced until dawn.
From faraway places,
The geese flew home.
The moon stayed up until
Morning next day.
And none of the ladybugs flew away.
So whenever you doubt just how special you are
And you wonder who loves you, how much and how far,
Listen for geese honking high in the sky.
(They’re singing a song to remember you by.)
Or notice the bears asleep at the zoo.
(It’s because they’ve been dancing all night for you!)
Or drift off to sleep to the sound of the wind.
(Listen closely…it’s whispering your name again!)
If the moon stays up until morning one day,
Or a ladybug lands and decides to stay,
Or a little bird sits at your window awhile,
It’s because they’re all hoping to see you smile…
For never before in story or rhyme
(not even once upon a time)
Has the world ever known a you, my friend,
And it never will, not ever again…
Heaven blew every trumpet
And played every horn
On the wonderful, marvelous
Night you were born.
Added on Sat 7th Sep 2013 10:49am

Liz Doe


Member since: 20/04/2013
I found this little poem written by someone else for a much loved Jacob. I hope she won't mind me changing it slightly and using it for our beautiful bear who has now been gone for longer than we had his beautiful presence. With so much love from his sad grandma.

Our Dearest Little Jacob

Our dearest little Jacob
Who was so pure and true
It's not at all right
What has happened to

We know you're okay
And know that you're happy
But It shouldn't be this way
It's just no way to be

You were one of a kind
And so easy to remember
You're never forgotten
And in our hearts forever

These days are so different
They're no way the same
It's now filled with sadness
So many tears and so much pain

Our dearest little Jacob
Who had less than two short years
You touched so many hearts
In the time you spent here

You're looking down from above
With your new beautiful wings
But we miss you so much
And it's so hard to stop weeping

Take care of mummy and daddy
Always be by their side
Give them sweet kisses
While they're sleeping at night

Our dearest little Jacob
You may no longer be here
But know we love you dearly
And we know you're always near

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Funny Moments

The day Aunty Katie bathed Jacob and he decided to have a pooh! Hilarious!

Mum and Dad singing “Hey Soul Sister” by Train at Jacobs bedside – Jacobs little head and eyes shifted left and right trying to take it all in, what on earth are you doing Mum and Dad?

Picnic with Grandma Lin, cousin Noah and Dad (Granddad Brian arrived a little later) on Babbacombe Downs in Devon. Lots of giggles and smiling – beautiful day.


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Stories

When Jacob was handed to us we were ‘overwhelmed’ by love, he was perfect. In the recovery ward we tried to get him to breast feed but he wouldn't. This carried on all day and at 10pm his blood sugars dropped to a level which saw him referred to the Special Care Baby Unit (SCBU). He was fed via a Nasal Gastric (NG) tube. He was never keen on feeding but he did start taking food but never really cried for it - A week later he was sent home.

He continued to feed and gain weight but he never took that well to breast or bottle-feeding. It took him ages and when other babies were guzzling 8 oz. he was taking ages to take 4 or 5oz.

At his 6-week check the Doctor was slightly concerned that he was not smiling. But on inspection of his eyes he thought he had found the answer. Jacob had no red reflex in his left eye, suspect cataract. We saw a consultant, and at 8 weeks he was diagnosed with a unilateral cataract in his left eye. I remember asking how he got it? I was told that as it was unilateral it wouldn't be genetic so not to worry. He was scheduled for surgery on the 1st March 2011. Whilst we were waiting for the operation, he was also diagnosed with mild hearing loss in both ears. I asked if it was related to his eyes, but everyone said no, it's just an unfortunate coincidence.

We started going to a postnatal group when he was about 8 weeks old. I was emotional due to the pending operation, but I was really upset as I looked at all the other babies lying on the floor kicking a trying to play and grab. I suddenly realized Jacob was different, as he didn't move as much. He hated lying on the floor and he wouldn't play and was far sleepier than the other babies.

This feeling continued, and after his operation things appeared worse as his feeding was a constant struggle. He would refuse one or two feeds everyday. He could only stay awake for an hour or so at a time. We had to patch his good eye 6 hours a day to get his poorly one to work, but it was so difficult as some days he was not awake long enough. I cried in front of professionals but they all said the same; “he will get there in his own time” – “It was a hard start, you are a first time mum, you are bound to worry”.

We weaned Jacob at 4 and a half months, and to be honest he took to food well. He ate very slowly but loved solid liquefied food. In fact Bob took a video of him making noises as if to say give me more. A month before he died he was still eating 1 and a half Weetabix for breakfast! He did try to start to feed himself and loved holding his spoon but unfortunately he never quite got finger food.

At 7 months we tackled the professionals again. He wasn't sitting, he wasn't rolling he was still not really grasping toys like his friends. This time although they still felt sure he was okay, they referred us to the early intervention team. We booked appointments with pediatricians and a physiotherapist in September.

At 8 months we went on holiday to Devon. We watched him that holiday and thought, maybe he is getting there. He was sitting well in his high chair; he was alert and smiled more than I have seen before. We came home and I felt positive with the progress he was making alone, with the extra support we were due to get, we felt sure things would be okay.

Around the 10th September Jacob appeared off colour. He got really sleepy, and started to stop eating as much. He seemed withdrawn. I took him to the Doctor but he said it was probably a cold and to talk to the pediatrician about my worries when we saw them on the 22nd September 2011. On the 18th he started bringing his legs up to his belly, I thought he had wind. On the 19th he once or twice looked like he was straining for a poop. Then on the 20th September 2011 Bob recognized that something was not right, he said he thought Jacob was having some kind of seizure. We took him to the Dr who told us to bring him back if it happened again. It did and we took him straight to Accident & Emergency (A&E). He had 4 or 5 seizures that evening Jacob was admitted into hospital that night.

An EEG showed chaotic brain activity and the medics started treating Jacob for epilepsy, they did blood tests too. The blood tests all came back normal. With his other problems, developmental delay and the seizures - the Doctor's involved the genetic team as they thought there maybe an underlying condition. We went home scared, confused and absolutely devastated 10 days later.

Jacob was seizing up to 16 times during the day and night for up to 20 minutes at a time. Lots of different types of medication were tried but nothing worked. The Doctor's felt it could be infantile spasms and even tried high dose steroids. They seemed to work for a bit, my little boy who had been all but silenced by his seizures started laughing again! However as soon as the dose was reduced he regressed again.

All the genetic tests were coming back negative.

In January 2012 his seizures took a turn for the worse and were going over 20 minutes. The Doctor's talked about trying the Ketogenic diet. They then started talking to us about Jacob's future, they felt things were not looking good and the words ‘Mitochondrial Disease’ were first mentioned. We still tried to remain positive, after all his results were all negative - we felt sure that was a good sign, “wasn’t it”? The medical team decided to do another MRI scan, skin and muscle biopsies and a lumbar puncture.

At the end of February 2012 we were called to see the doctor who showed us his MRI scan results. It showed large lesions of dead brain tissue and that his brain stem was largely fluid. The words Leigh's Disease and Alper's were then mentioned. We felt like our world had imploded. The most precious thing in our life was dying and there was nothing we could do to help. Our beautiful son was going to leave this world before us both, that wasn't the way it should be. Worst still was that when looking online we could see we had little time left. We felt like someone had stabbed us in our hearts.

We were told that the other test results were still not back and they would give a better idea of which disease it was. We went home but told very few people, we felt we needed all the results first.

On the 17th March 2012 Jacob woke up with a temperature, he was so very fragile and a common cold could take him from us. We took him to A&E as he wouldn't take his medication and Jacob was admitted with a chest infection. He seemed to be getting better but was still very sleepy.

On the 20th March 2012 they talked about us going home. At 10pm that night Jacob stopped breathing and we were told he needed to go to intensive care. They told us he may not make it through the night – ‘He did’. The next day we were told he may not make it home. The medics felt sure it was Leigh's and most children die this way from this disease. We cried a lot, we just couldn't imagine how we could go on without him. We wanted to die instead! Family & friends visited and cried. When we were alone I begged him to let me see his eyes again and let me take him home. We got him christened in Pediatric Intensive Care Unit (PICU).

By the Sunday things were improving. He was breathing for Himself. The tube was taken out on the 27th March 2012 a week after he went into PICU. We went back to low dependency ward on the 29th and then home on the 2nd April 2012. Our brave little boy had listened to us and decided that he wanted to come home.

The Doctors asked us what we wanted to do if it happened again? The question no parent should ever have to hear. We decided not to intubate again, PICU was not a place we wanted our little bear to have to go again.

We went home to try to live our life the best we could. We visited a local hospice and arranged to go there for a weekend visit after our family holiday the following week. Bob my husband had already taken a couple of months off work.

We started doing things from Jacob's list, which was a list of things we wanted him to do before he died. He had some pizza, he had his feet measured and little boys shoes fitted. He had some cool trainers. He slept in a big boy bed with a pillow and duvet. He went on the cliff railway in Torquay and tried beer in the pub with his Dad and big brother Josh. He saw lots of his family. Most importantly we got to kiss his perfect lips and look into his beautiful eyes. The last thing the PICU consultant said to us was to go and enjoy our summer. We really thought we'd have one more summer.

On the 16th of April 2012, my Birthday, we went to Center Parcs courtesy of The Lily Foundation. Jacob had the start of a cold/chest infection so we started him on some antibiotics. That evening he had a terrible seizure. I held him close to me as the rest of the restaurant ate their food oblivious to my poor little boy. We remember feeling so alone. We put him to bed that night and he needed a lot of suction to prevent Jacob swallowing too much saliva.

In the morning on the 17th he seemed ok and we gave him his breakfast via his Ng tube. Jacob was then sick and he started to choke. Dad’s quick reactions meant he cleared his airway and saved his life and by the time the ambulance had arrived he seemed ok. We were taken to hospital and an X-ray showed he has aspirated some of the sick, Jacob needed oxygen.

On the 19th we were told Jacobs chest was clear he had no infection at all but despite this his breathing was laboured and he needed more oxygen. The Leigh's had reached the part of his brain that told him to breathe and he was forgetting how to. We told our families, his grandparents rushed to be by his side. Deep down I knew he was saying goodbye.

We woke up the next morning, Mum had an overwhelming urge to get into bed with him. At 1130 am on the 20th April 2012, 501 days after he came into our lives, our beautiful Jacob bear died in my arms very peacefully whilst his Daddy held his hand.

We drove him to the EACH hospice in Milton and he was put in his own room with his own duvet and pillows and teddies. We stayed at the hospice with him. Many people saw him and many people held him and said goodbye. My 10-year-old nephew asked if he could cuddle him, he did and I read them both a story.

He stayed there till his funeral on the 30th April. It was the saddest most beautiful day of our lives. 200+ people came to say goodbye to my special boy. And for the first day in weeks of torrential rain the sun shone. At the crematorium I read Jacob a poem, I read every night before he went to sleep:

Jacob bear its time for bed

You must do as daddy says

Go and put your jarmies on

As daddy sings another song

Jacob bear its time for bed

You must do as Daddy says

Close your eyes without a care

Because mummy and daddy love their sleepy bear

We miss him so much, but know in his short life he made such a difference and we are so proud to be his mummy and daddy. We know one day we will hold him again, but until then our hearts will always ache and have a Jacob shaped holes in them.


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Survived By

Mum and Dad - Claire and Bob Wright, eternally grateful for our beautiful little boy x.
Brother Josh - Proud, focussed and loved x.
Grandparents - Liz and Dave, always on hand to support and love their precious grandson x.
Grandparents - Brian and Lin, who loved and cherished their grandson x
Aunties, Uncles, Cousins and extended family and friends - please add your own tributes x.

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Immortalis

Jacob's letter read at his funeral on the 30/04/12 by his God Father Nick

Hello everyone

I'm sorry I had to leave you all so soon, but I decided to leave before it became too difficult for me and everyone I love. I did so much with my Mummy and Daddy including trying beer and meeting so many of my family especially at my slightly cold picnic at mead foot. And as my big brave cousin Ethan says, don't be too sad because I am not poorly anymore and I am running and laughing and talking to all of the other Angels in heaven.

I am being well cared for by all my Great Grandparents already here. They all knew who I was since I look so much like my Daddy.

As everyone knows from 8 weeks old I have had some problems and without lots of people, life would have been so much more difficult for Mummy , Daddy and me.

My big brother Josh, I love you very much and I would have loved to play the drums with you so each time you do, hit them really loud for me.

I miss my Grandparents so very much. Grandad Brian for making me smile, Grandma Lin for my lovely picnic at the Downs when the sun shone. Grandad Dave for being a bit like Santa and making me all sorts of toys and things that made my life easier. I really think you should apply for the job as Mr Christmas! Grandma Liz, thank you for all my cuddles and looking after me and my Mummy when things were a bit hard and for sitting for so long waiting for all my appointments. I always particularly loved dribbling on your shoulder!

I miss my beautiful Aunty's Katy, Sadie and Claire. You all gave the best kisses. My big strong Uncles Dominic, John and Paul, I will always try to be as brave as you all.

I love my cousins Ruby, Noah, Sam, Ethan and Hallie. I want Hallie to know I am the best Angel at doing handstands, Noah to know they have monster bingo in heaven and to Sam always be the best Daddy you can be. Ethan, I love we had the same hair colour.

I was cared for by so many people. All to often today we see the bad in the world. I know that there is definitely more good than bad. If I can leave anything behind for you all it will be that.

I want to thank Paula and Helen and Angie. I loved my visual play lessons with Angie and my under 5's Camsight group.

To the beautiful people at Brainwave I love you. You made such a difference to my Family. Julie and Amanda you are two very special people. I know when my mummy thinks of her best memory of me she thinks about me playing with you both in February, you made me remember I had two hands again.

To my amazing Nurses and Carers on wards D2, C2, PICU and C3. There are too many to mention who are true angels on earth. Remember my smiley eyebrows and let them make you smile when you think of me.

To countless special very clever Dr's. Those that had saved my life and those that made it a bit better, thank you. Especially my friend Dr Gautum.

To Sian, Karen, Harry and the lovely Lucy. I know my mummy and daddy can not thank you enough. But know this, you will always hold a special place in my families hearts.

To Sarah, Mags and Jan from the community Team, I give you a massive eyebrow raise and ask that you all look after my Mummy and Daddy.

Some people just do that bit extra and no group of people did that more than the lovely ladies at Sutton pharmacy big kisses to you all.

And finally to the beautiful, cheerful, hopeful people at the EACH hospice in Milton. I know many of you never met me in this world but you cared for me so beautifully when I went into the next and took such amazing care of my Family.

There are others and I love you all and I know my Mummy and Daddy thank you all. That also goes to the special friends in their life that are still helping them everyday.

I know my Mummy and Daddy miss me very much. They tried their hardest to look after me and although it was a difficult journey they would not have changed a minute of it. They say I have made them better people. I hope I have helped others to see the good in life.

I know that when they looked at me they didn't see epilepsy, developmental problems, sight and hearing loss, they just saw me Jacob Bear and we will always be a family.

I ask you all not to be too sad because as my cousin's Hallie and Ethan told their mummy, you can always keep me in your heart and see me in your mind.

Lots of love, kisses and a bit of dribble

Jacob Bear


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