Aliah's Care Fund

Our angel Aliah came to us in July 2009. Born with a rare chromosomal abnormality, she suffers from a multitude of developmental and physical disabilities .

At four months old Aliah underwent her first open heart surgery to repair a VSD (Ventricular Septal Defect) where there were multiple holes in her heart that would not close. At nine months Aliah had tube insertion surgery for her to receive additional nutrition due to the VSD. At two years of age she underwent her second open heart surgery where a titanium device was implanted to correct the defects. At ages four and six Aliah had heel cord surgery to correct her club feet . The surgery was needed in order for her feet to become flat so she can feel the floor to assist her in walking. Her struggles have been extremely difficult, and she has braved them in a way that even we as parents are astounded by.  

Today, at age 9, Aliah is non-verbal, non-ambulatory, and requires intensive round the clock care.

Aliah is a fighter. We knew that from day one. In her short life she has made enormous progress and she continues everyday to do so and does it with an infectious smile. Aliah truly touches the heart of every person she meets and she has brought amazing people into our lives as well. Her growth has undoubtedly been guided not only by her own perseverance, but by those dedicated to her advancement such as her nurses, caretakers and occupational, nutritional, physical, speech and vision therapists. 


Though she exudes pure joy constantly, Aliah's life is a challenge every single day. Having adequate tools for her development is crucial. She requires numerous medical devices for basic physical functions in addition to those necessary to further her progress and reach her maximum potential. But proper equipment is extraordinarily expensive. Medical insurance typically covers only part of the expenses. However, most often approvals are required which can take up to over a year before equipment is actually approved. We want nothing more than for our daughter to have the same opportunities at life as any other child.



Thankfully, Aliah continues to grow. But with her growth come new challenges and requirements. She has recently been diagnosed with scoliosis. Her bones are growing faster than her body. She is at a pivotal point in her life where this needs to be rectified immediately. Any further curvature of her spine and she will require invasive surgery. We need to do everything we can to get her posture fully erect. As parents , there is no greater fear than the welfare of your child. We do not want our little girl to endure yet another surgery which can be prevented through corrective measures. Ultimately, our goal is for Aliah to be WALKING. Proper equipment , orthotics and several therapies will guide her to standing upright independently and hopefully, to ultimately taking her first steps.

 

One of our greatest requirements for Aliah is a wheelchair enabled vehicle to support her and all of her equipment necessary for travel. Without that, travel will soon be extremely challenging for her.  While we hope and pray that she will one day be able to walk, we cannot know when, or if ever, that will happen. To help Aliah reach this goal , she would require a medically equipped bicycle, treadmill, a TRAM ( transfer and mobility device) and therapies such as  horse, and aqua therapy . But presently, due to her growing size, she would also require a special adaptive chair that allows her to properly sit, play and learn to eat independently , a car seat for an immobile child of her size and a proper bathing chair.

We have been blessed in the past to receive pieces of equipment through amazing organizations dedicated to assisting medically frail and disabled children. These have given her incredible assistance to get to where she is now. And we need to keep that going.

With much gratitude the support you can offer in helping  Aliah reach her full potential and live a healthy life is truly a blessing and we thank you.

100% of your donation will go towards her medical needs.

Erica & Anthony Scoma