Please help Ariana get a wheelchair accessible van

It is with an earnest heart that I write to you today on behalf of our friend Brad Clews in need of assistance. Brad has a daughter who is confined to a wheelchair due to debilitating illness. His family is seeking to raise funds to purchase a wheelchair accessible van to aid in his daughters transportation needs.

Ariana is a bright and beautiful 7 year old , but her condition had made simple tasks such as getting from place to place a burdensome challenge. Brad and Taylor Clews have dedicated themselves to caring for and supporting their daughter through her difficult journey, but the lack of proper transport has become a significant obstacle in their lives.

With a wheelchair accessible van, Ariana would gain more independence and freedom, allowing her to participate in activities and events that are currently out of reach. Simple tasks such as running errands or going to the doctor could be accomplished with greater ease and comfort. As a friend I have witnessed Brad and Taylors love and dedication for their daughter. It is clear that they would go to any length to improve her quality in life.

I understand times are tough for many, but even the smallest donation can make a significant impact. Every contribution will bring Brad and Taylor one step closer to the goal of acquiring a wheel chair accessible van. Your generosity and kindness will not only alleviate the financial burden on this family but also provide a life changing difference in Arianas life.

Hello, please meet 7-year-old, Ari (Ariana Clews), our miracle, our superstar!

About Ariana:

Ariana was born on the 28th of July 2016, exactly 142 days before her expected due date, weighing 835grams. Born without a heartbeat, Ari received life-saving treatment, and from that moment, the roller coaster began. Within the first two days of life Ari contracted NEK, a gut infection that required the removal of more than half her bowel, totalling 3 major surgeries in the first 100 days of life, at the same time, was diagnosed with grade 4 and grade 3 bleeds on the brain. Every scan, painfully praying the bleeds would shrink and resolve on their own, which eventually occurred, but not without leaving permanent damage.

After 99 days of fighting in NICU, Ari graduated and was transferred to the Special Care Unit. During this time Ariana underwent casting for her Talipes (Club Feet) and began to tolerate feeds via an NG tube. On Day 123, Ari was finally strong enough to come home. We had to learn how to safely feed Ari via a NG tube, and how to insert and remove the tubes, avoiding extra hospital visits.

As Ari began to grow and develop, we started to notice certain milestones weren’t being met, expected, though, with no diagnosis, treatment was impossible. After many appointments and tests and no answers, at 12 months old, at Ari’s first eye appointment, the specialist diagnosed Ari with Moebius Syndrome – Ari’s 6th cranial nerve is absent and her 7th is paralysed resulting in the inability to smile, frown, use her lips, raise her eyebrows, and turn her eyes outwards (Ari was completely cross-eyed at this point).

This diagnosis promoted further testing which also resulted in a diagnosis of SAT B2 Associated Syndrome, Cerebral Palsy, and Global Developmental Delay. As a result of Ari’s early birth and diagnosis’s Ari:

- Is non-verbal – She communicates by making sounds, crying, laughing, makes attempts to point, and uses a PODDS book and a communication device.

- Has scoliosis – Ari wears a second skin all day and a spinal brace in the evenings and will require spinal surgery where adjustable rods will be inserted and adjusted every 6 months.

- At the age of 5 Ari began having seizures – Has undergone EEG’s, sleep studies, and is now managed with medications and the emergency department.

- Has a sleeping disorder – requires daily medications and someone to co-sleep, wakes all hours and like most children, terrible to sleep with

- Has a specialised feeding regime – Can only consume pureed foods. Hydration, formula, and medications are all administered via a PEG in her stomach.

- Behavioural and sensory challenges – From birth, Ari laughs and cries at the most unique things, currently:

o Ari loves: her family (especially her cousins), having her teeth brushed, having a shower, cuddles, lots of cuddles, food, the water, wearing glasses, the vacuum cleaner, music, dancing, walking in her walker, & watching Tik Toks!

o Ari’s dislikes: More than one person with her at a time, sitting next to her, laying next to her, sitting, or lying anywhere, anyone cooking, having her hair brushed, getting dressed, having a pad change, small, confined spaces, transferring into and out of the car, and the most challenging of all, TRAVELLING IN THE CAR!

- When Ari is unhappy, Ari kicks, screams, scratches, pulls hair, is impossible to console. Being non-verbal makes this challenging as to know what is wrong and what she wants. Is it medical, is she is pain, is she hungry or tired? Ari’s behavioural issues now regularly result in vomiting everywhere.

At the age of 2 Ariana was accepted into the NDIS program where she receives weekly therapy, regular in-home support, specialised feeding, and adaptive equipment. As Ari continues to grow, become stronger, and more independent, the need to keep her safe when travelling to and from appointments, school, and personal events is paramount.

Wheelchair accessible vans can be a steep expense for any individual, particularly if you are already having difficulties paying for other medical related expenses. Having a wheelchair van will allow Ari and her family to keep doing incredible things and giving Ariana the life she deserves.