We got to know the meaning of the word passion because of her. Like she always says… “there is no limitations to follow your dreams”.
Her passion for Zumba is contagious. Zumba definitely is a life changer, it changed her life, it saved her. Saved her in all different ways… gave her wings. Gave her the ability to dance with the heart.
Despite her condition and her limitations she always finds a way to put a smile in every person who surrounds her; and make them feel that they are able to accomplish anything.
Today as her friends and zsisters we want to work together to raise funds to help her improve her health and quality of life. She never complains or asks for anything, but there are so many challenges and things behind that we don’t get to see. After getting to know her better we all agree it is time to make a difference in her life because she deserves a better.
Welcome to Ami’s webpage. Down below, you’ll find some information about her, how she lives with her condition and how you can assist in improving her life quality in a simple but effective way.
Ami was born with a condition called Spina Bifida Myelomeningocele that made her lose movement and sensibility of the legs. It also caused other abnormalities in her life as hydrocephalus, orthopedic issues and bladder and bowel control problems (including incontinence).
For the last 12 months, her condition has deteriorated because of some pressure sores and skin irritations. Physicians say those bed sores can potentially reach the bones, causing an infection that will require hospitalization. Actually, it has already happened twice, once 4 years ago and then again this past year, but it was controlled on time, and no permanent harm was done.
Just so you can imagine her situation, she stays home alone for the most part of the day because her mom has to work 2 (sometimes 3 shifts) so they can make ends meet. Despite the loneliness and all her health issues and limitations, she keeps smiling, dancing, creating choreographies and, most of all, being a huge supporter of the Zumba® program to all instructors she can possibly meet and get close to (even virtually).
Since it was her 34th birthday in June and a group of close friends (who she calls Zisters and Z-Brothers with the Z standing for Zumba) are thinking about her life quality and how we can all come together and help her, an idea has popped out in our minds: making a virtual birthday bash with not one, but two master classes where we could all dance and, as the primary goal, raise funds to purchase essential equipment that definitely would help her become more independent, healthier, happier and more active.
– A reclining power wheelchair $40,000 – $60,000
– Car transfer lift, Hitch and Cargo Carrier – $7,600
– Portable Transfer Lift $5,800
– PureWick™ Urine Collection System – $600
– PureWick™ Accessories and Catheters 6 months $2640
Looking for about $16,640 without taking the wheelchair into account – The remaining $13,360 will go toward this goal.
WHY NEEDED: Part of Ami’s condition is incurable bladder & bowel incontinence, which requires multiple diaper changes a day to prevent infection of existing pressure sores and painful skin irritations caused by long periods of confinement to her bed.
Transferring manually from a standard wheelchair to a bed for changing requires the assistance of multiple caretakers/helpers (2-4 people) and is both physically and emotionally exhausting for Ami and her helpers. The portable indoor/outdoor transfer lift will help make this transfers easier. She has a very big and old one now that is only for her home, cannot be carry out. This one is portable and lightweight so they can take it anywhere and also not have to do so much strength effort.
Having a reclining power wheelchair would be the absolute ideal situation, as it would allow Ami to tilt back and have her changes conducted from the safety of her chair with the help of just one or two helpers. Right now the foley is coming out with frequency and she cannot be in her wheelchair without getting wet more than 4 hours. A power wheelchair would allow Ami to experience the ZINCON this year with more independence and keep clean to not infect her wounds.
The same can be said for the car transfer lift to transition Ami from her wheelchair into the car. She will be able to enjoy more the outdoors life, attend the classes she wants, to also go to rehabs to teach zumba.
As for the Purewick, it is a urinary system that will help her to rest better and stay dry and clean while in bed since it is not portable. Unfortunately, there is not system other than the foley to be carried around. And it keeps coming out and she has to wait a week to get another one inserted. So the Purewick will be a big aid to heal her wounds and give her more space to enjoy her friend’s home visits without being embarrassed when and accidents happen.
You can see the difference of transferring with lift and without the lift in the videos above. So you can understand what we mean. Needed to say, this life makes it easier, but nothing compare to the one we want to get. Tis one is heavy and espite making it easier it is so heavy it cannot be taken out of the house and it requires and enormous strength effort from both of them (Mom and Daughter).
Having this on our minds causes us to be in a hurry because we have a huge event called Zumba® Instructor Convention (ZINCON) right around the corner, and we’d love to see her living this unique experience to the fullest. We know it’s the first time in two years, we will be all together in person for an event like this. Since she’s been talking non-stop about it, we would love her to feel its whole energy without any pain or embarrassment.
In summary, your support and contributions will help Ami to experience not just ZINCON but her life to the fullest by expediting access to toileting and hygiene needs, as well as conserving her physical strength and energy for dancing and spreading Zumba love.
AND YOU CAN HELP US.
YOU CAN HELP AMI.
Below you can find a series of questions and answers about this initiative as well as some factual information about Ami’s birth condition Spina Bifida
We are a group of friends who met through virtual classes during the pandemic. Ami who brought us together. We share a mutual passion for Zumba and Ami.
Diana Velazquez (FB – IG)
Viviane Chevalier (FB – IG)
Yare Pena (FB – IG)
Waleska Herrera (FB – IG)
Vivied Barrientos De Subero (FB – IG)
Quetzalli Pinzon (FB – IG)
Jess Renovales (FB – IG)
Ami faces many challenges in her daily lifestyle. Simple things such as personal hygiene, hair & scalp care, special adult diapers, special transportation are not always promptly available for her and require extra effort and expenses. Even though Ami’s mom is a CNA (Certified Nurse Assistant), Ami spends most of her day alone. Ami has been waiting to receive Home Care for over 4 years, but help has not come yet. And these are just a few of the things she faces aside from her multiple medical conditions. So yes, we strongly believe a lot of these can be improved with the right knowledge, tools and help.
Right now we are saving the contributions you have kindly given her while we await to learn more about her medical conditions as well as her daily personal needs and challenges, we will start prioritizing and spend the money accordingly keeping in mind that our main goal is to improve her quality of life.
If you have any questions, please feel free to contact us (Amy’s Zisters). Ami has not asked for anything, actually she never asks for anything she just gives. This is a group effort from us, her zumba sisters and we ask you to be kind and respectful to Amy’s privacy and direct your questions to us.
Spina bifida can occur in different types: spina bifida occulta, myelomeningocele (my-uh-lo-muh-NING-go-seel) or the very rare type meningocele (muh-NING-go-seel).
Spina bifida occulta
“Occulta” means hidden. It’s the mildest and most common type. Spina bifida occulta results in a small separation or gap in one or more of the bones of the spine (vertebrae). Many people who have spina bifida occulta don’t even know it, unless the condition is discovered during an imaging test done for unrelated reasons.
Myelomeningocele
Also known as open spina bifida, myelomeningocele is the most severe type. The spinal canal is open along several vertebrae in the lower or middle back. The membranes and spinal nerves push through this opening at birth, forming a sac on the baby’s back, typically exposing tissues and nerves. This makes the baby prone to life-threatening infections and may also cause paralysis and bladder and bowel dysfunction.
Signs and symptoms of spina bifida vary by type and severity, and also between individuals.
Myelomeningocele. In this severe type of spina bifida:
The spinal canal remains open along several vertebrae in the lower or middle back
Both the membranes and the spinal cord or nerves protrude at birth, forming a sac
Tissues and nerves usually are exposed, though sometimes skin covers the sac
Causes
Doctors aren’t certain what causes spina bifida. It’s thought to result from a combination of genetic, nutritional and environmental risk factors, such as a family history of neural tube defects and folate (vitamin B-9) deficiency.
Complications
Spina bifida may cause minimal symptoms or minor physical disabilities. But severe spina bifida can lead to more significant physical disabilities. Severity is affected by:
This list of possible complications may seem overwhelming, but not all children with spina bifida get all of these complications. And these conditions can be treated.
Walking and mobility problems. The nerves that control the leg muscles don’t work properly below the area of the spina bifida defect. This can cause muscle weakness of the legs and sometimes paralysis. Whether a child can walk typically depends on where the defect is, its size, and the care received before and after birth.
Orthopedic complications. Children with myelomeningocele can have a variety of problems in the legs and spine because of weak muscles in the legs and back. The types of problems depend on the location of the defect. Possible problems include orthopedic issues such as:
Curved spine (scoliosis)
Abnormal growth
Dislocation of the hip
Bone and joint deformities
Muscle contracture
Bowel and bladder problems. Nerves that supply the bladder and bowels usually don’t work properly when children have myelomeningocele. This is because the nerves that supply the bowel and bladder come from the lowest level of the spinal cord.
Accumulation of fluid in the brain (hydrocephalus). Babies born with myelomeningocele commonly experience accumulation of fluid in the brain, a condition known as hydrocephalus.
Shunt malfunction. Shunts placed in the brain to treat hydrocephalus can stop working or become infected. Warning signs may vary. Some of the warning signs of a shunt that isn’t working include:
Headaches
Vomiting
Sleepiness
Irritability
Swelling or redness along the shunt
Confusion
Changes in the eyes (fixed downward gaze)
Trouble feeding
Seizures
Infection in the tissues surrounding the brain (meningitis). Some babies with myelomeningocele may develop meningitis, an infection in the tissues surrounding the brain. This potentially life-threatening infection may cause brain injury.
Tethered spinal cord. Tethered spinal cord results when the spinal nerves bind to the scar where the defect was closed surgically. The spinal cord is less able to grow as the child grows. This progressive tethering can cause loss of muscle function to the legs, bowel or bladder. Surgery can limit the degree of disability.
Sleep-disordered breathing. Both children and adults with spina bifida, particularly myelomeningocele, may have sleep apnea or other sleep disorders. Assessment for a sleep disorder in those with myelomeningocele helps detect sleep-disordered breathing, such as sleep apnea, which warrants treatment to improve health and quality of life.
Skin problems. Children with spina bifida may get wounds on their feet, legs, buttocks or back. They can’t feel when they get a blister or sore. Sores or blisters can turn into deep wounds or foot infections that are hard to treat. Children with myelomeningocele have a higher risk of wound problems in casts.
Other complications. More problems may arise as children with spina bifida get older, such as urinary tract infections, gastrointestinal (GI) disorders and depression. Children with myelomeningocele may develop learning disabilities, such as problems paying attention, and difficulty learning.
Spina bifida treatment depends on the severity of the condition. Spina bifida occulta often doesn’t require any treatment at all, but other types of spina bifida do.
Surgery before birth. Nerve function in babies with spina bifida can worsen after birth if spina bifida isn’t treated. Prenatal surgery for spina bifida (fetal surgery) takes place before the 26th week of pregnancy. Surgeons expose the pregnant mother’s uterus surgically, open the uterus and repair the baby’s spinal cord. In select patients, this procedure can also be performed less invasively with a fetoscope through ports in the uterus.
Surgery after birth. Myelomeningocele requires surgery. Performing the surgery early can help minimize the risk of infection associated with the exposed nerves. It may also help protect the spinal cord from more trauma.
During the procedure, a neurosurgeon places the spinal cord and exposed tissue inside the baby’s body and covers them with muscle and skin. At the same time, the neurosurgeon may place a shunt in the baby’s brain to control hydrocephalus.
Here is a guide and a video that explains step by step on how to use zoom on your browser,
Apple or Windows Computer, Android or IOS.
Para Instrucciones en Español:
CAN'T WAIT TO DANCE WITH YOU!