Lachlan Mark Murray

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Lachlan Mark Murray

Getting the news that your baby may never grow up due to a rare form of epilepsy, he is at high risk of just not waking up one day is beyond comprehension

We are living in a helpless world, watching him fight daily., with no end in site.

We want to feel we are contributing in some way by donating to help find a cure, and end epilepsy for every family. .

Let's celebrate our beautiful boy on his Naming day, and dig deep into our pockets, so we can donate to the Epilepsy Foundation.

Mark and I are so grateful for all of you. 💜

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My Updates

Now he sleeps

Saturday 26th Aug

He was born on 9.2.23 which was a Thursday..

He went to sleep on 24.8.23 which was a Thursday.

I sung to you until your heart stopped beating on my ear. You never heard us cry, just loving you and hearing your favourite songs.

Please stay cuddled up to me at night until we can be together again my darling son.

I love you lachlan Mark Murray

living in a world that isn't real

Monday 10th Jul

I waited my whole life for him. I cried, sobbed, prayed for him everyday for along as I can remember. And finally meeting his dad only a year earlier, I knew my baby was on his way to me.

We got 8 days of somewhat Normal bliss.. I cried over not knowing how to breastfeed, am I a terrible mother? Is he ok? Am I going to be ok? Can I actually do this?

All normal right?

I remember that time being very hard, and now looking back I wish having sore nipples was still the only problem.. I would give ANYTHING to have them be sore again, because that way he would be feeding still and I was doing what mums were born to do..

Day 2 of life, during the night I woke to my son making very unusual loud noises and jerking his body. I didn't know what was happening, but I knew it was frightening to me. I picked him up, cuddled him, told him it was ok and he settled. It only lasted seconds.

I tried to explain this to Mark, to my family, to my friends and everyone said the same thing

" Babies make funny noises, they jerk alot in their sleep"

And this is TRUE.. they do!! They definitely do. But I knew deep down this wasn't that.

Ofcourse I got side tracked, still mentioning it but I was in prime PP mode. Crying, sore, traumatised by what my body had just gone through, and just trying to survive.

These little episodes only seemed to happen at night so I couldn't show anyone, I couldn't film it quick enough because I snatched him up as quickly as my C section body would let me, so I could 'settle' him.

He stopped breathing day 6. During a feed, he turned blue. I calmly told Mark call an ambulance.

They came, he was fine, we went to hospital and said its common for babies to do this, not overly worried.

I told the paediatrician what I was seeing. I remember using the word seizure..

"Dr it looks like my son is having seizures" I even demonstrated physically.

His response " Newborn babies make noises, they make funny movements"

So, we went home.

Fast forward to day 8 my son was stiffening his legs right up in the air, with one swift movement and sometimes he would let out some gas.

We thought it was the CUTEST thing we'd ever seen.. I was laughing. I was telling him to do it again!!! In the videos I'm laughing at him.. I was laughing at my son having multiple seizures, and I didn't even know it.

Something that will haunt me until the day I die.

We were advised to pop into Sydney kids Children's Hospital just to be sure, after a family member saw the video, who showed it to a Dr.

And sure enough, that is where our hell began.

I watched my 8-day old baby have a needle put so far up into his spine as he screamed being held down. I watched him have a catheter put into his penis while he screamed.

It took 6 different Drs/Nurses to get a canula in. He screamed, screamed and BEGGED for them to stop. I sobbed, Mark sobbed, looking at each other thinking what the f%$# is happening.

My baby 5 months later, is physically scarred on his hands from this very night. A constant reminder of what he went through, and we just had to watch.

Technically day 9: Mark is asleep on the chair next to me, Lachlan is asleep in my arms. Just watching him, phone in my hand texting my ride or die sisters who stayed 'by my side' the whole time.

And he did it.. he started 'making newborn noises and movements ' and I caught it on camera. FINALLY.

As soon as we showed a Neurologist Dr this footage things started moving alot faster.

She confirmed our son was having seizures. What kind she didn't know

We spent 11 days In hospital, sharing my PP in a room with 3 other families. Holding my screams in my pillow. Terrified. Watching him seize every few minutes, hundreds a day.

It took months for a diagnosis. Multiple medications later, that do not work.. for his team to tell me he has

Early Infintile Epilepsy Encephalopathy. EIEE.

There is no cure for this Syndrome. Your son will be severely disabled, if he makes it past 2 years old, I read online.

Ofcourse we all do it.. Dr Google knows everything right?!

I'l ask his Drs. Maybe the almighty internet was wrong. I flat out asked.

Is my baby going to die? which she responded. I just don't know.

He is at high risk of going to sleep and just not waking up, because of the amount he is having and the amount of medication he is on that is not working.

We are not giving up on him. All you can do is love him and do your best.. she said.

So that's it.. time to 'get on with it'

Our son is now tube fed. He can no longer hold his head up. He no longer smiles. No longer talks. No longer does tummy time.

He stops breathing during seizures now. I watch his body go lifeless for 5 seconds and all I can do is watch.. that's all I seem to do.. just watching watching, never doing anything to help him.. what can I do? How can I fix his poor brain? Tell me how and I'd do it!!

He screams so violently during some of them, I tell him it's OK to go to sleep, and not wake up my darling..mummy and daddy will be ok, as I can't bare to watch him be tortured anymore.

This is his life now. We wait everyday thinking, is this one it? Is this nap it?

All tests have come back flying colours. There is genetically nothing wrong with him or his parents.

It's just the luck of the draw.

I try my best to be everything he needs me to be. Sing to him constantly. Play with him as best I can. And love him like no little boy has ever been loved before

He was born 9.2.23 which was a Thursday.

So every Thursday is his Birthday. 💜

Lachlan Mark Murray

Thank you to my Sponsors

$1k

Timmins Family ?

Life is so desperately cruel sometimes. Your little boy is so blessed to have a Mumma and Dad like you both. All our love 💛

$903.23

Marilyn Barry Murray.

Marilyn Barry. Claire Mark you are the best Mum Dad to this little warrior our little grandson. Will never forget this date. 9.2. 23

$582.10

Macarthur Motorcycle W

$520

Mum Dave And Charlie Mccluskey

We are I Awe of you all xxxxxx

$520

Anonymous

$501

M&a Civil

Love you guys

$500

Andrea & Daniel

Sending you all our love and strength. Xxx

$316.50

Ramsay And Co

We love you guys. Stay strong

$300

The Gallachers

Your Aunties love you very much little gummie. We will care for you and love on you always 💜💜💜

$220

Duncan

Sending love and support to your family

$211

Prianca

Sending you strength

$211

Brad Cole

$211

Monicque & Daniel Soliman

Wishing you strength!

$211

Matthew Johnston

$157.50

Dean Wright

$108

Stephanie

I wish I could give you more, reading this has made me cry so much and as a mum I can only imagine this nightmare. Sending you a big hug and all my prayers 💕

$108

The Matthews Family.

Keeping you all in our thoughts and prayers

$105.50

Mat Magri

$105.50

Anonymous

$105.50

Us Robbos

I wish there were some words of comfort that we could offer you both. The truth is though, that there’s nothing fair or right about what is happening to your little family at this stage. All you can do, is keep loving your little baby boy………Adam, Renee & Caleb Xo

$105.50

Clare And Robert Ashford

Wishing you guys the strength you need to fight everyday.

$105.50

Jill And Matt

Sending all our love always darling boy xxxxxx

$105.50

Joel Cork

$105.50

Gemma Campton

$105.50

Misty Angela And Ella Duncan

I wish we could give you more. More money, more support or in a perfect world ….a cure. He is worth all the love and pain - you are all loved beyond measure. Stay strong my lovely ❤️

$105.50

Michele Marriott

Sending hugs. Xxx Miss Shelley

$105.50

Denise Maxwell

Thinking of you everyday.

$105.50

David And Lauren Murray

$105.50

Scott

$105.50

Ria Taggart

$105.50

Anonymous

$105.50

Chrissy & Cameron Breakspear

Sending love & strength 💜

$105.50

Nicholson’s

Sending all our love x

$105.50

Stevens Family

We love you, we are with you and we wish we could do so much more for you all xx

$105.50

Wilkies

Sending u all love from The Wilkies

$105.50

Brianna, Mitch, Jai & Harley

Thinking of you all during this hard time. Sending lots of strength and love your way xx

$105.50

Arkles

$105.50

Brad & Lina Burge

$105.50

Barbara Donnelly Murphy

Sending love, prayers and strength to you and your family. Barbara and John x

$105.50

Bailey Smith

$105.50

Natasha Clancy

Sending love and strength, ❤️ Tash

$105.50

Danny Sant

I wish you all the best with hope and positive days. Stay strong together. Lachlan.. you beaut champion little fighter. You’ll get through this mate. We are all with you. Love and support 💙🫶🏻

$105.50

Deano, Charlie & Aurora

Little Lachlan - your mummy and daddy were meant to be yours. Life isn’t always fair and it throws challenges at us when we least expect it to and to those who don’t deserve it. We will never fully understand why god gave you these challenges in life but it is clear for all To see that he gave you your mummy and daddy because he knew they would be your biggest warriors. They would love you more than you could ever imagine and they would give you the best life that they can. It may not always feel that way - some times they cry and long for better for you but I guarantee you - they never stop loving you and never will. You are also loved by your extended family of friends and aunts and uncles and family and especially your uncles Deano & Charlie and cousin Aurora. But always - leading the front line is Mum and Dad and they are yours - forever Xx

$105.50

Cj

$105.50

Renae Caddy

In memory of your precious Lachlan 💜 You are in our thoughts Renae, Lochy and Fraser (our little warrior)

$105.50

Kerry And Bruce Close

We hope the money raised helps researchers find a cure for EIEE.

$105.50

Sal

We love you, we support you and we’re with you xx

$105.50

Cathy Devine

Sending love

$105.50

Alex Mcavoy

All my love to the best Mum & sweetest little boy xx

$105.50

Robyn Baker

My arms are wrapped around you both ❤️💙

$105.50

Rebecca Pile

$105.50

Noni & Adam Shand

Sending all our love to you, Mark and your precious little guy Xx

$105.50

David Ramsay

$105.50

Amanda And Mark O’meara

Sending you all lots of strength and love. Xx

$104

Matthews Family

Sending lots of love to your family.

$101

Chris Gordon

$101

Chewy And Loz

We are thinking of you all. Keep fighting little man.

$100

Amanda Nader

$79.13

Joshua Jones

$79.13

Leah Baker

Sending all my love xx

$79.13

Megan Guy

$78

Jess Nile

Sending my love to you all. How lucky Lachlan is to have a mum like you ❤️

$52.75

Cats Bayley

❤️❤️❤️

$52.75

Simone Mayhew

Love you, iv always admired your strengths and I know that you will move mountains for this cause. Thinking of you daily and sending you all of my love x

$52.75

Ali Ciesla

😭 so sorry for what you’re all going through. Really hoping for some life changing discoveries asap. 💙

$52.75

Skye Mcmullen

The luckiest boy to have a mum as strong and brave as you Claire, sending you all strength & love ❤️

$52.75

Louise Harkiss

So sorry you have to go through this. Praying for your sweet, sweet boy and sending you both lots of love 💕 xx

$52.75

Wendy Langford

$52.75

Anonymous

$52.75

Cynthia And Chelsea

💜💜💜💜💜 We are following your stories and are in absolute awe of the love and strength you have. It’s not fair , it makes no sense , there are no words to say . All our love Cynthia and Chelsea xxxx

$52.75

Nicole

Hope you r all ok if you need anything just call or text love Nic

$52.75

Roberts Susan

$52.75

At Home Dog Spa

$52.75

Margaret And Alex Purdie

💙 love and prayers for your family.

$52.75

Mia Bruno

❤️❤️❤️

$52.75

Lisa Ambler

You are such an amazing mum to watch and you both are an inspiration as parents. So much love to you ❤️

$52.75

Mosh

Anything to help he is beautiful.

$52.75

Elaine Smith

$52.75

Emily H

Love you all so much ❤️

$52.75

Sharon And Mark Hutton

❤️❤️❤️

$52.75

Maxine Beet

Can’t begin to imagine what u & Mark are going through. My thoughts & prayers with u & all your family. XO

$52.75

Kate

❤️❤️❤️

$52.75

Sarah Phillips

Sending all my love for your little man 💙

$52.75

Mon & Ben

So heartbreaking ❤️‍🩹 . You both are so incredibly strong. Sending all our love x

$52.75

Dannielle & Elliot

Sending our Love & Strength

$52.75

Lisa Liebenhals

Money does not even touch the side of what your dealing with. Any relief is relief and for the cause of any baby in grief I will happily support! I cannot imagine the trauma you are going through. Push on mum and dad. Miracles happen!!!!

$52.75

Jamie Tolmie

❤️❤️

$52.75

Joanne

Sending BIG love to you all. Love Jo Rob Kaylyn and Tahlee

$52.75

Hayley Everitt

Sending loads of love and support to this cause. You guys are incredible xx

$52.75

The Orams

I just couldn't imagine what you are all going through. Sending you all the biggest hugs, strength and love.

$52.75

Margaret And Graham Wright

Tears for your little boy I’m so sorry life has been cruel to you all

$52.75

Kate Bonanno

Sending you my love x

$52.75

Josh S

$52.75

Monica Sarofim

It was a pleasure to have met your little family briefly at Bowral. Praying for you all every day

$52.75

Kat

Sending my love and the hopes to find a cure. Your a strong amazing woman xxx

$52.75

Marilyn Willis

$52.75

Mandy And Luke Palmer

Sending strength and love x

$52.75

Caitlin & Mani

Thinking of you x

$52.50

Tori

Sending Love

$52

Kendall L Gibbons

Thinking of you ❤️

$51

Josie Bec

Lachlan is so lucky to call you his mumma. Such a great cause. Sending you all my love and support. Love, The Becvarovski's

$50

Susan & Brent Thomas

Sending love xxx

$50

Beth Agar

$41.60

Lauren Biniares

Keeping your family in my thoughts at this time x

$40

Samantha Button

$31.65

Natasha Singh

Enjoy the special time you have together ❤️. Love has no limits

$27

Loura Garlick

$27

John Connell

My thoughts and prayers are with Lachlan and family.

$27

Savanna Murray

For our family and other families who go through this. Our love Brock and savanna Murray 💜

$26.38

Rebecca Varela

❤️

$26.38

Emily Bladon

Sending you lots of strength and love x

$26.38

Kim And Nathan Wild

Claire, sending you mark and your little warrior Lachlan all the love strength and blessings in the world 💙💜

$26.38

Amelia Moyle

Sending you strength, love and hope at this time for your beautiful boy xxx

$26.38

Tracey And Dean Horne

Sending our love xx

$26.38

Raegan Xx

Sending u all the love in the world. Lachlan is just gorgeous xxx

$26.38

Lydia

💕

$26.38

Rebecca Mcleod

Sending you and your family love and strength.

$26.38

Ryan Holt

$26

Alisha Blackmn

$21.10

Will Jacobson

$21.10

Amanda Swan

$20.80

Korena Russell

$20

James

$20

Anonymous

$10.55

Tiffany F

He is so loved and I'm sure he finds his strength through you x

$10.55

Anonymous

Sending prayers 💙

$10.55

Glenda Johnstone

$5.28

Anonymous

Unemployed. Wish I could donate more!!!❤️

Lachlan Mark Murray

My Activity Tracking