Sophia the brave 💜
Please help Sophia enjoy her life, all we want is for our princess to have is a happy life 💜Auckland
Little Sophia was born on the 30th of April 2020. Parents, Brooke and Jerry are absolutely besotted with their little princess.
Unfortunately little Sophia started experiencing some difficulty breathing at 3days old - and was rushed through to Starship hospital PICU - Little did they know she was having a metabolic crisis and within 24 hours she was diagnosed with an extremely rare metabolic disorder known as
🧬 Propionic acidemia or PA 🧬
Propionic acidemia means that Sophia’s body is unable to break down amino acids properly she is missing a certain enzyme in her liver that metabolises protein which means if she consumes to much protein it turns into toxins.
This toxic acid is called Ammonia.
This is what makes her condition very dangerous. As the damage ammonia does to your body is permanent and irreversible.
Her body will go into a metabolic crisis (episodes): It can cause vomiting, breathing problems, abnormal movements, seizures, swelling on the brain, stroke and coma.
Metabolic crisis (episodes) can be caused from:
* Eating large amounts of protein
* Illness or infections
* Going to long without food
* Stressful events like surgery’s
Every time Sophia has an episode she has risk of it affecting her these can include:
* learning disabilities
* Delays in walking or motor skills
* Abnormal movements
* Poor growth
So it is very important that when Sophia does get sick or has an episode that she is taken straight to hospital for treatment as it’s a very serious condition in which the hospitals don’t treat lightly.
Sophia is very lucky to have a massive team behind her helping her along the way with her growth and to keep her well.. she has her own doctor, nurses, dieticians, Speech language therapist, Occupational therapist and Physio’s.
PA is a very rare disorder with roughly 1 baby every 4years being born with this condition in the world...
on top of that - 30% of children with PA don’t live past the age of 4 and 80% not past 18years old.
We still have a long road ahead of us and there is a lot of gene therapy being tested currently overseas in the US but is currently another 5years away.
Sophia is now on the list and waiting for a liver transplant.
Sophia’s life will never be “normal” and she will forever have to be monitored closely and be on a strict feeding plan.
But right now all our plan is, is to enjoy each moment and day we have with her, take each day as it comes and just hope and pray for the best for her as we don’t know how long she is going to be with us. 🦋 💫
Please follow us on Instagram 💜 https://instagram.com/brookieama?igshid=ukvndhgrim14
Or Facebook if you prefer 💜
Alesha Davis' involvement (page creator)
My sister her husband and their baby 💜I just want to help them to care for their Sophia
Use of funds
The money will go towards Sophia’s 24/7 care, bills, hospital trips special equipment and activities that will not only help Sophia’s development but make precious memories with their limited time.
We have a LIVER...
Late last night we got the call to head into starship as they have a possible ‘perfect’ liver available for Sophia.
We wandered around the house frantically walking back and fourth not knowing what to pack, what we needed, how to feel or what to say.
Jerry and I both just looked at each other and cried...
We packed as much stuff as we could think of, thinking that this was it but had no idea what the next 24hours held for us let alone next few hours...
we got into starship and went straight up to the ward. They started off with normal checks to get her ready for possible surgery for tomorrow (today).
She’s had bloods, urine check, Covid swab, X-rays, numerous attempts at lines.
There has been lots of cuddles, tears, excitement, stresses, laughs, smiles and singing but most importantly endless LOVE and kisses before her surgery.
She has now successfully gone off to surgery and we will hopefully have an update on how the surgery is going by 7pm.
So we will keep you updated on how she goes..
Thanks for all the beautiful messages and prayers please continue to keep her in your prayers tonight..
Surgery could be anywhere between 10-14hours so please bare with us.. 🤍
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This page was created on 5 May 2020 and closes on 19 May 2021.