Amanda Maree Photography » Amanda Maree Photography - Brisbane Newborn Photographer

Levi…Brisbane Baby Photographer

“Today I hold you in my arms…

a day that’s filled with joy…

I never dreamt we’d be here…

My darling little boy.

Our time together to this point…

filled with tears & pain…

But every day I’m thankful…

You’re brightness in this rain…

Watching you struggle…

Each day I know it’s true…

You are my little warrior…

I know that we’ll get through…

Your braveness & your courage…

it fills my heart each day…

I love you, little darling…

In every single way.”

 

Today I had someone special in the studio…now I know I say that every time but this gorgeous boy was all that and more. I feel so honoured to be able to capture special memories for this beautiful family and to share their story. You see their little man is a warrior like no other…every day he fights just to be here. He has the most amazing team working hard so that he continues to live his best life and thrive and he is doing just that! This week he celebrates his 8mth birthday and that is a momentous occasion so he brought his Mumma and his Aunty to the studio and we captured him in all of his gorgeousness. I’ll let his Mumma share their story so far and I’ll share some sweet photo’s along the way but I just know you’ll agree, he is absolutely divine.

World…Meet Levi.x.

Levi had onset of focal seizures on feb 2nd at 4.5months old. He went from one to two seizures up to over 100+ a day in just over a week. We have trialed 7 medications and are currently on 3. 2 x anti epileptic and the keto diet. We are however one of the lucky ones as we have managed some reasonable seizure control. On 26 March (world epilepsy day) we had a meeting with the neurologist who confirmed a diagnosis from a gene panel of mutation KCNT1. This disorder along with medication resistant seizures also results in global development delay with most who have this condition never learning to walk or talk. He also has hypertonia & possibly CVI and future complications may be unsafe swallow meaning fundo/g tube, difficulty breathing (bipap), scoliosis and brittle bones, hip and leg tendon lengthening due to spasticity. Despite all these challenges Levi is one the the most chatty, chubby and happy bubbas ever. He is also stubborn and determined and with his family behind him will beat the odds and be living his best life. We are lucky to have an amazing little dude who will teach us what truely matters in life.❤️
Eight month old baby boy sleeping in oval cane basket with sage green knit layer and wearing sage green knit romper with dried flowers on wooden floorNow when your gorgeous 8mth old client arrives snoozin then you snuggle them up in a basket and squeal with joy…this doesn’t happen often…so I took great delight in snapping these sweet sleepy photos. Eight month old baby boy sleeping in oval cane basket with sage green knit layer and wearing sage green knit romper and bonnet with dried flowers on wooden floorOk…lashes for days and can we all take a moment to enjoy these chubby little details…those lips and cheeks and chins and fingers and and and….he was so lush! Eight month old baby in wooden doll cot wearing blue knit pants with blue curly fur on blue flokatiMumma chose a gorgeous gallery of soft sage greens and blues…and it went perfectly with Levi’s sweet complexion. Eight month old baby boy laying on green sage blanket on wooden floor Eight month old baby boy laying on his stomach on green sage blanket on wooden floorLevi has been working super hard with the physio’s and his family and look how strong he is getting during tummy time…such a clever boy. Eight month old baby boy sleeping in wooden bed with light blue blankets and knit romper on wooden floor with brown felt heartsLiterally so chill…he dosed for a bit then woke with this gorgeous eye contact…heart melting. Eight month old baby boy in wooden trench bowl wearing sage green nappy cover on green curly felt on wooden floorHe’s just discovered his hands…so Levi was super busy during our session today. Eight month old baby laying on blue blanket with blue felt heartsThe chatter that was happening during this set up was so adorable…he was having the most enormous conversation with us all about something very important…not sure what but it sounded pretty exciting! Eight month old baby boy laying in wooden bowl with brown felt and wearing brown pants on purple background with brown wooden frame with two brown leather gloves inside and 3 purple ribbonsThis is a special set up we did representing Levi’s warrior spirit that gets him through every day and the purple ribbon which is the International symbol representing Epilepsy.
Levi it was an absolute honour to have you in the studio today and to be able to give your family the gift of capturing this special moment in your journey. You are truly one in a million and I feel so privileged to have met you today. Keep fighting gorgeous boy.x.
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