Home for Sydni
Sydni is a delightful 7.5 year old girl who will proudly celebrate 7 years cancer free this upcoming November on her 8th birthday. When Sydni was 2 months old she was diagnosed with a rare and malignant brain tumor. In her first 22 months of life she endured approximately 18 surgeries, 9 months of chemotherapy, and too many hospitalizations to count. It is truly a miracle she is here today and living a very happy and healthy life. However, Sydni has not walked away from her early trauma without deficits. Sydni is a non-verbal, non ambulatory child who requires 100% feeding tube and adult caregiver dependency. Irrespective of these challenges, Sydni is extremely active and very interested in enthusiastically exploring the world around her. Within the past year she has begun taking steps in a gait trainer and defying all the doctor speculations. Sydni is learning to use a high tech communication device to communicate, and she inspires everyone who knows her with her bright smile and cheerful disposition.
Sydni lives with her mother, big sister, Tari and little brother, Tristin, in South Boston, MA in an 800 square foot, first-floor four room apartment. The first floor apartment is only accessible by climbing several stairs and has become non conducive to her growing needs, especially as she gets bigger. Three things will help Sydni and her caregivers as she grows and becomes stronger:
- An accessible entrance will provide Sydni with safety and continuity, while also removing the physical barriers for her caregivers of moving Sydni into and out of the home.
- An accessible bathroom is desperately needed. The existing bath is far too small and will become even more challenging to access as Sydni continues to grow.
- Restructuring the current living space will provide an extra room for Sydni. This will allow enough space for her hospital bed and the comfort to sleep properly. It will also offer extra living space for Sydni to access her therapy tools that aid her in her development.
To further detail the benefits of how these changes will offer so many rewards for Sydni, each is explained further in the following paragraphs.
Sydni has a wheelchair that provides her with the optimal support and positioning she needs for her to access her environment and communication device. Unfortunately this chair can only be utilized at school because it is too heavy to lift up the stairs and into the house. She uses a different wheelchair at home and for transportation to and from school, which endures excessive bumping up and down the stairs multiple times a day. In order for Sydni to have continuity and to utilize the same wheelchair both at school and at home, a handicap accessible entrance into her apartment is required. The handicap entrance will provide assistance to safely and easily transfer Sydni into and out of her home with her wheelchair as she grows and becomes too heavy for her caregivers. The accessible entrance will also benefit Sydni on rainy, snowy and cold days when her wheelchair has to sit outside. Sydni then is carried out of the home in order to be loaded into the chair since exposing her to the elements make her more susceptible to illness. While one strong person can lift Sydni today, each day she grows taller and heavier and soon two adults will be required to transfer Sydni.
Currently Sydni gets baths every night to help relax her body and strengthen her muscles. Just three years ago Sydni didn’t move her lower extremities at all, and there was speculation that she had possible paralysis. Aqua therapy and daily baths have been instrumental in Sydni’s miraculous recovery where she is now moving her lower extremities with full force. This aqua therapy has allowed her the ability to take steps and actually walk, two activities doctors said would be impossible for Sydni. Her current bathtub is next to impossible for her caregivers to safely lift and transfer her into and out of, as it is situated away from the caregivers and requires great arm strength and often two people with very little space to work. Even entering and exiting the bathroom is extremely challenging. A handicap bathtub/bathroom would provide the proper tools and environment for caregivers to help Sydni. Sydni would have a safe experience playing in the buoyancy of the water, one of her favorite past times and a critical part of her ongoing development, improving her muscle strength, tone, range of motion, flexibility, posture and trunk stability.
Sydni has a seizure disorder and vomits throughout the night due to severe esophageal reflux, both keeping her and her caregivers up a good portion of the night. Her feeding machine constantly beeps and she wakes easily and readily throughout the night when she has even the smallest distraction. Sydni shares a bedroom with her sister but there is not enough room for the side rails of her hospital bed which allow her caregivers to see her at all times. While Sydni loves waking up to her sister Tari, who makes her belly laugh each and every morning, Sydni needs a good nights sleep and ample room for the full use of her electric hospital bed. Sydni has benefited greatly from sharing a room with her sister for the past 3 years; increased stimulation, a loving and supportive atmosphere, extra eyes and ears when Sydni needs help and doesn’t call out herself for it, but the benefit of both sisters having their own rooms now to promote good night’s sleep will contribute to healthier and happier lives as they get older and encounter greater challenges during their respective school days.
Sydni needs the ability to ambulate more freely within and around her home. She has her own gait trainer (a walking device in which she takes as many as 50 consecutive steps on a daily basis over a 30 minute period at school). Unfortunately she is unable to utilize this walking device at home, thus limiting her progress. The gait trainer does not fit in the home and the walking space isn’t available for her to move around as needed. She would benefit from having a living room added on to the back of the house so that she can ambulate freely back and forth between the rooms within her home. This will give her greater independence, greater motivation to reach beyond the many obstacles she has already overcome, and the opportunity for continuity in her therapeutic care. In addition, Sydni’s seizure disorder requires constant supervision and having adjacent rooms will allow her caregivers to keep Sydni in sight at all times, which is imperative for her safety. The new living room will be larger and allow space for her computer working area where she can continue with the work she is doing at school and improve her communication and cognitive development.
Overall, the elimination of barriers to Sydni’s home, as outlined above would benefit Sydni’s quality of life and afford her greater independence and opportunities for further development. The rewards for her family to be able to care for her more readily and promote greater independence while watching her further growth and development is priceless. Thank you for considering these barrier-free home renovations – truly an investment in a better future for one caregiver’s miracle-child!