Help Save Sierra’s Life

About Sierra
Sierra was born with 8 dysmorphic features; a wide anterior fontanelle, smooth philtrum, asymmetrical earlobes, posterior anus, a broad anteverted nose, fused eyes, short palpebral fissures & bilateral microphthalmia. 

Brain
She has multiple structural brain abnormalities including a dysplastic corpus callosum, multiple posterior fossa cysts, dysplastic cerebellar hemisphere, low pressure hydrocephalus, Perivascular cysts & a dysmorphic underdeveloped cerebellum.

More than half of Sierra‘s brain didn’t get the chance to regress & she has chunks of her cerebellum missing.

Eyes
Sierra is also legally blind, she has (PHPV) persistent hyperplastic primary vitreous and bilateral microphthalmia, this means Sierra has no potential for vision for as long as she lives.
Both of her retinas are detached, she has a cyst behind her right eye with scarring inside & behind both eyes. Tissue damage, an abnormal eye anatomy & bilateral dense, inoperable cataracts. 

Breathing, heart, fluid & kidneys
She also has choanal atresia & a deviated septum. This means she is just lucky enough to be breathing through one nostril. Sierra has an open heart valve as well as extra fluid in her kidneys and her brain. 

Mobility 
Due to Sierra‘s brain abnormalities and her severe vision impairment she may never be able to walk, talk, or live a normal life like you’d hope with any child.

With all her issues combined the likelihood of her being mobile or functioning well is very low. She is classed as having a severe disability.

Sierra requires a lot of medical attention due to her special needs. Being a young mum, hospitals and the public system haven’t treated me with equality or been upfront when it comes to decision-making and wha they choose to share with myself regarding my daughter.  

I have been told that with all of Sierra‘s conditions she’s not compatible with life & they’re surprise she made it to birth.

The public system has a long waiting list so, in order to save my daughter’s life I’ve chosen to do her operations & therapies privately to give her the best life she could possibly have while she’s still with us.

As you know private visits with a consultant can be quite costly. On a regular basis Sierra needs to see: 

- occupational therapy
- physiotherapy
- speech pathology
- cardiologist 
- neurologist & a neurosurgeon
- ophthalmologists 
- orthopaedics

She is yet to be accepted into NDIS as she doesn’t have a diagnosed syndrome it’s been quite difficult & she’s been rejected 4 times. 

Diagnosis
Sierra is extremely rare and geneticist are yet to discover if there is another person with all these issues combined. There is only so much they understand & Sierra‘s condition is very complex, they’ve seen nothing like it in Germany,the United States and around Australia.

Operation & other medical needs
The professionals are unable to give a life expectancy on Sierra, however..because of her brain issues and cyst rapidly growing she is at high risk of developing brain damage. The fluid on her brain, structures and heart problems combined are life-threatening.

Due to Sierra‘s structural brain abnormalities there has been an obstruction that prevents proper fluid drainage.

She is soon to undergo a life saving operation concerning the fluid build up as it is putting pressure on her brain making her irritable & uncomfortable with endless pain. This in combination with her severe vision impairment makes it very hard for her to be happy or comfortable and at any given moment. 

If Sierra does not get her brain operation done she unfortunately will not make it in this life.  After the operation there is no guarantee that she will live a normal life because of all of her other issues however that doesn’t mean I won’t do everything I can to make her as comfortable as possible and give her the best life that she can have. 

Depending on how long Sierra lives & her development she will need to have a brain operation every few years as her body grows & anatomy will continue to change.

Sierra will eventually need an operation to remove obstructing bone in her nasal passage that causes breathing difficulties because of the way her nose bone and other facial structures have formed & possibly a heart operation depending on how she develops overtime. 

Every bit of money donated will go towards Sierras medical needs & future operations. She has her own bank account where funds are kept separately and used specifically for medical purposes only. 

Please do not feel obligated to give, however a share or keeping Sierra in your prayers would be so much appreciated.

Thankyou for taking the time to read about my daughter.