Our names are: Hanna, Patrick, Ryan, Aria and Victoria (Tory) and we are trying to raise money for our beautiful daughter and sister Aria!
Aria was born full term, however during the pregnancy I had to go to the high risk doctor because at 21 weeks the obgyn discovered that the baby’s head was smaller than it should have been. During the pregnancy Aria’s head continued to be small but wasn’t much of a concern to the doctors. When she was born she was a healthy baby, passed all the newborn screenings and everything seemed to be perfect!!
At around 3 and 6 months check up I started to worry because Aria wasn’t able to sit up by herself and it felt like her core was a little weak but her pediatrician wasn’t worried about that too much. It wasn’t until her 9 month check up that her pediatrician started to think that Aria had microcephaly. We were referred to a neurologist and after visits, CT scan and MRIs the doctor said that her brain was smaller than it should have, her meninges were smooth, she had liquid around them and her cerebellum was smaller than it should be.
From that point we have been in and out of different doctor appointments and she was getting worse at her fine and gross motor skills. At around 11 months she has been having physical, occupational and speech therapies to improve her skills. Unfortunately, there was little to no improvement. Aria at the age of 2 years and 9 months can’t communicate, sit up, crawl or walk independently.
At around 2 years and 2 months Aria started to refuse spoon feeding and started to loose weight so we were referred to the GI clinic. From there she had a surgery in March 2018 to place her g-tube and that’s how she has been mostly fed by. Aria has had multiple seizures and brake through seizures and is on anti-seizure medication. Since the placement of the g-tube she has been vomiting almost every day which has been very difficult on her and her family.
Aria has a wheelchair, a stander and a walker that she is using daily to help with her mobility. It has been a very tough, emotional and difficult road but the love we have for our daughter and sister keep us from giving up and we always want what’s best for her.
Since Aria has been having issues with sleeping in her crib she has been sleeping on a stuffed huge pillow next to our bed to make her feel comfortable. However, since she has been vomiting so much her GI doctor suggested a continuous feeding, which means that she is hooked up to her feeding machine 16-18 hours a day! We are keeping her propped up on her pillow but we know that the best option for her would be a hospital, raised and adjustable bed at the comfort of her house. Those beds are extremely expensive ranging from $9000 up.
We will also be always having to buy a new wheelchair, stander, walker, a bath chair and multiple devices to help her in everyday life. Not to mention different surgeries MRIs, labs and expensive doctor appointments. Our sweet son and daughter have been such great help with making Aria feel special, happy and loved on top of the love my husband and I give her! This girl is our sweet angel! She is the sweetest little girl you will ever meet! Her smile is so genuine and kind! She WILL melt your hearts!! We love this girl so much and she made us all better people!!! I feel so sad that she has to go through multiple therapies a week, multiple doctor appointments, multiple labs, all the vomiting ets. it breaks our hearts!
We are currently undergoing different genetic labs to determine her diagnosis. The first genetic test revealed that Aria has a micro duplication of gene 16p13.11 and recently her neurologist reached out and thinks that Aria has the Galloway-Mowat syndrome - a rare autosomal recessive neurodegenerative disorder which is also associated with microcephaly, hiatal hernia (hence the vomiting) and a nephrotic syndrome. We have now also added a nephrologist and an orthopedist to the list of doctors due to the diagnosis and her hip and limbs popping out of her sockets. On top of all this Aria is regularly seeing by a neurologist, GI, physical, occupational and speech therapist to help with her growth.
We are very concerned about Arias health, and her future! We are kindly asking everyone for any donation! No amount is too little! Aria will always be in need of new devices and probably a help from institution once we are older and won’t be able to help with lifting, carrying, feeding and all the everyday life aspects! We as a family need to make sure she is taken care of once we can’t! So please, we would so much appreciate any support!
Thank you so much for reading our story and any support that is given!
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