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Our dear friends and family (Updated 9/1/11)
Our beloved son, Samuel Patrick Sparks passed away on August 30th 2011 at 8am. He died from complications of seizures and respiratory illness. He touched many lives and will be missed tremendously. A lot of people have asked us about donations towards charities or how they can help?
We have a bench that was given to us by our friends and family when our daughter, Sydney Isabella died on December 28th, 2006 in Happy Valley Park. This park is very close to our home. This Bench has meant so much to our family. It is a place for us to go and be with her. It overlooks the children's waterpark and we have spent many days/eves there remembering her or grieving for her....
If it touches your heart to make a donation, please do so above on the "donate" button. All of those donations will go towards a bench for Sammi in the same park. If there is any funds left over, Todd and I will donate all of those funds to a charity for children with cerebral palsy that we have been associated with.
There is a poem that my brother found that has meant a lot to me since my little Sammi passed and I will share that with all of you.....
Please don't tell me that you know how I feel, Unless you have lost your child too. Please don't tell me that my broken heart will heal, because that is just not true. Please don't tell me that my son is in a better place, Though it is true, I want him here with me. Don't tell me that someday I will hear his voice, see his face, Beyond today I cannot see, Don't tell me it is time to move on, Because I cannot. Don't tell me to face the fact that he is gone, Because denial is something I can't stop. Don't tell me to be thankful for the time that I had, Because I wanted more. Don't tell me when I am my old self again, You will be glad, I'll never be as I was before. What you can tell me is you will be here for me, That you will listen when I talk of my child. You can share with me my precious memories, You can even cry with me for awhile. And PLEASE don't hesitate to say his name, Samuel Because it is something I long to hear everday! Friends, Please realize I will NEVER be the same, But if you stand by me, you may like the new person I become someday..... In loving memory of my amazing beautiful son Samuel Patrick Sparks 11/17/2006-8/30/2011 Thank you to those of you who have stood by us, hoped with us, prayed with us and cried with us....we have drawn strength from each of you and will continue to do so in the days to come! Love Tisha, Todd and Londyn Sparks
Sam’s Story of Courage, Hope, Strength and Perseverance
Hi There! My name is Samuel Patrick Sparks, but you can call me Sammi, just like everyone else. I was born early at 29wks and 3days. I was born 10minutes after my twin sister, Sydney. I have cerebral palsy, but that is only a word. I want to share with you a story about my life and what it is like to live in my body.
My parents tell me when my sister and I were born it was very quiet
in the delivery room. The doctors were very concerned about us. We were breathing on our own, but we were very small. They also tell me that for the first few weeks we did great! I had been eating, breathing, and growing! But things were about to take a turn for the worst. I was three weeks old when my sister and I got a cold virus somehow. My body started shutting down. Things were not looking good. The doctors had told my parents I would not make it through the night. My parents were told to simply hold me because there was nothing else that could be done for me! They also were told it would take nothing short of a miracle for me to live. My parents had prayed for us since the beginning, but they now begged God for our lives.
I could hear my mommy’s voice. I could feel the touch of her hand on my skin. My mommy spoke in a whisper. She was telling me it was okay if I couldn’t hang on. She was telling me how much she and daddy loved me. She told me how hard she and daddy had tried to have me and my sister. She told me they had always wanted a little boy and that she was a better person for having me, even if it was only for a short time. As I heard mommy talking to me I grasped her finger in my hand and shook it. I wanted her to know I am still fighting and I am not giving up. I lived for her voice and her touch. She was so soft and she loved me so much. I didn’t want her giving up on me just yet!
My parents got a phone call on Christmas morning from the doctor. He told them, “You have gotten your Christmas miracle; your boy is making urine!” However, my sister was not doing as well. December 28th, 2006 my sister, Sydney Isabella Sparks passed away.
Now that it was up to God to save me, save me he did! My body may not be perfect, but God gave me life. He filled my heart with love for others. I may have suffered a lot of pain in this life, but I never let it affect my attitude.
I left the hospital February 12th, 2007. My daddy had rented a limousine and my first ride in a car was definitely in style!! Mommy and daddy celebrated my life then and they still do today!
I was only out of the hospital a month when I had my first follow up appointment. They diagnosed me with cerebral palsy. I had started rolling over early and the doctor told mommy that it was because of my stiff muscles. Mommy and daddy were devastated, but as usual they fought hard to help me overcome it! They immediately enrolled me in every therapy available. I was in PT, OT, ST, horse therapy, acupuncture, herbs and any and everything they had heard could help treat cerebral palsy.
I was 9months old when there was a celebration for the wall of courage. The wall of courage is an award given to just a few children a year who have survived a life threatening illness and overcome it with courage and strength. They had a dove releasing ceremony.
I released one for myself and a second for my twin sister, Sydney. I was the youngest child in 2007 to receive this award.
Overall, the first year of my life was tough! My body would have muscle spasms uncontrollably and I would cry for hours on end. It was especially hard for me at night. I never slept an entire night until after I was a year old. My mommy would hold me and walk me all night long. Daddy never knew where he would find us passed out in the morning. Mommy, I love you for this! I still have a hard time sleeping at night.
My first birthday was amazing! All of our friends and family came to help me celebrate. The theme was “rock star” and I sure felt like one! Thank you, Mommy for giving me such a great birthday! I also had to have a feeding tube put in around this time. I had started having seizures and the medication took away my appetite. I can still eat, but it is not my favorite thing to do!
When I was 18months old my little sister, Londyn Marley Sparks was born. To be honest I wasn’t crazy about the idea at first, but she has really grown on me. I have said a few words, just after Londyn was born we were at a 4th of July picnic and I said “Londyn” over and over while mommy said her name to me. She is awesome! I truly love my little sister even when she hits and bites me. She makes me smile all the time. She is so much fun to be around.
I started going to preschool just after I turned 3yrs old. I go to school 2days a week on Mondays and Wednesday’s. I go to therapy on Tuesdays and Thursdays. I am learning to talk using switches.
I have also desperately been trying to walk! I work so hard
At it. Now that I can use my switches to get my point across I have a lot to say! I ask to walk a lot and I ask to ready books a lot! I am also starting to learn colors.
I love swim therapy and I love going to the zoo. My favorite animal is monkeys. My second favorite animal is bears. I love driving my power chair too! I love playing with my computer and playing video games.
I am a real trooper mommy always says. I always try my best at everything and I never give up! They don’t know, but I have learned this from watching them. I never let anyone tell me I can’t do something. I may not be able to today, but who knows what the future holds.
Guess what everyone! My mom and Dad have done a lot of research on stem cells since the day they found out I had Cerebral Palsy. The past year they have been following two other boys who have had the stem cells transplant in Germany. They would use my own bone marrow to get the stem cells. My parents have also saved my sister’s umbilical stem cells in case they can use them to help me someday.
Mommy says stem cells are important they can help my brain repair itself! It doesn’t make sense that we can’t do this here in the United States . I may have to go to Germany to have it done, but that is okay with me! I don’t want to be stiff anymore. I want to walk. I want to talk and eat. My dream is even to just sit up! I really want to play with my sister!
Cerebral palsy is condition, sometimes thought of as a group of disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing, and thinking.
Ther are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed.
Symptoms of cerebral palsy can be very different between people with this group of disorders. Symptoms may:
- Be very mild or very severe
- Only involve one side of the body or both sides
- Be more pronounced in either the arms or legs, or involve both the arms and legs
Symptoms are usually seen before a child is 2 years old, and sometimes begin as early as 3 months. Parents may notice that their child is delayed in reaching, and in developmental stages such as sitting, rolling, crawling, or walking.
There are several different types of cerebral palsy. Some people have a mixture of symptoms.
Symptoms of spastic cerebral palsy, the most common type, include:
- Muscles that are very tight and do not stretch. They may tighten up even more over time.
- Abnormal walk (gait): arms tucked in toward the sides, knees crossed or touching, legs make "scissors" movements, walk on the toes
- Joints are tight and do not open up all the way (called joint contracture)
- Muscle weakness or loss of movement in a group of muscles (paralysis)
- The symptoms may affect one arm or leg, one side of the body, both legs, or both arms and legs
The following symptoms may occur in other types of cerebral palsy:
- Abnormal movements (twisting, jerking, or writhing) of the hands, feet, arms, or legs while awake, which gets worse during periods of stress
- Tremors
- Unsteady gait
- Loss of coordination
- Floppy muscles, especially at rest, and joints that move around too much
Other brain and nervous system symptoms:
- Decreased intelligence or learning disabilities are common, but intelligence can be normal
- Speech problems (dysarthria)
- Hearing or vision problems
- Seizures
- Pain, especially in adults (can be difficult to manage)
Eating and digestive symptoms
- Difficulty sucking or feeding in infants, or chewing and swallowing in older children and adults
- Problems swallowing (at all ages)
- Vomiting or constipation
Other symptoms:
- Increased drooling
- Slower than normal growth
- Irregular breathing
- Urinary incontinence
There is no cure for cerebral palsy. The goal of treatment is to help the person be as independent as possible.
Treatment requires a team approach, including:
- Primary care doctor
- Dentist (dental check-ups are recommended around every 6 months)
- Social worker
- Nurses
- Occupational, physical, and speech therapists
- Other specialists, including a neurologist, rehabilitation physician, pulmonologist, and gastroenterologist
Treatment is based on the person's symptoms and the need to prevent complications.
Self and home care include:
- Getting enough food and nutrition
- Keeping the home safe
- Performing exercises recommended by the health care providers
- Practicing proper bowel care (stool softeners, fluids, fiber, laxatives, regular bowel habits)
- Protecting the joints from injury
Putting the child in regular schools is recommended, unless physical disabilities or mental development makes this impossible. Special education or schooling may help.
The following may help with communication and learning:
- Glasses
- Hearing aids
- Muscle and bone braces
- Walking aids
- Wheelchairs
Physical therapy, occupational therapy, orthopedic help, or other treatments may also be needed to help with daily activities and care.
Medications may include:
- Anticonvulsants to prevent or reduce the frequency of seizures
- Botulinum toxin to help with spasticity and drooling
- Muscle relaxants (baclofen) to reduce tremors and spasticity
Surgery may be needed in some cases to:
- Control gastroesophageal reflux
- Cut certain nerves from the spinal cord to help with pain and spasticity
- Place feeding tubes
- Release joint contractures
Stress and burnout among parents and other caregivers of cerebral palsy patients is common, and should be monitored.
Cerebral palsy is caused by injuries or abnormalities of the brain. Most of these problems occur as the baby grows in the womb, but they can happen at any time during the first 2 years of life, while the baby's brain is still developing.
In some people with cerebral palsy, parts of the brain are injured due to low levels of oxygen (hypoxia) in the area. It is not known why this occurs.
Premature infants have a slightly higher risk of developing cerebral palsy. Cerebral palsy may also occur during early infancy as a result of several conditions, including:
- Bleeding in the brain
- Brain infections (encephalitis, meningitis, herpes simplex infections)
- Head injury
- Infections in the mother during pregnancy (rubella)
- Severe jaundice
In some cases the cause of cerebral palsy is never determined.
A full neurological exam is critical. In older people, testing cognitive function is also important.
The following other tests may be performed:
- Blood tests
- CT scan of the head
- Electroencephalogram (EEG)
- Hearing screen
- MRI of the head
- Vision testing
Cerebral palsy is a lifelong disorder. Long-term care may be required. The disorder does not affect expected length of life. The amount of disability varies.
Many adults are able to live in the community, either independently or with different levels of help. In severe cases, the person may need to be placed in an institution.
Getting the proper prenatal care may reduce the risk of some rare causes of cerebral palsy. However, dramatic improvements in care over the last 15 years have not reduced the rate of cerebral palsy. In most cases, the injury causing the disorder may not be preventable.
Pregnant mothers with certain medical conditions may need to be followed in a high-risk prenatal clinic.
- Bone thinning or osteoporosis
- Bowel obstruction
- Hip dislocation and arthritis in the hip joint
- Injuries from falls
- Joint contractures
- Pneumonia caused by choking
- Poor nutrition
- Reduced communication skills (sometimes)
- Reduced intellect (sometimes)
- Scoliosis
- Seizures (in about half of patients)
- Social stigma
Call your health care provider if symptoms of cerebral palsy develop, especially if you know that an injury occurred during birth or early infancy.
Together we will have one voice, here is how we can.
Tell us your story and how you or someone you know is making a difference in there child, friend, or patients life. We want to hear progressive ideas. Life changing Ideas that have made a difference in the day to day quality of life with the person they know who has Cerebral Palsy. This is why we want to hear your story... Tell us your story and what you have discovered that others have not. Tell us why it has worked. Together, we can maintain the hope of a better future and live with less effects of Cereral Palsy.
Why is this important? We have discovered in our journey so far that everyone living with a person having Cerebral Palsy has different but similar conditions. Each one is unique but so so similar in so many ways. Everyone has had to interpret information from Doctors, therapists ext. Each one of us has a unique story to tell.
We want to hear from you and how you made a difference. This web site is dedicated to making a difference.
Thanks to all I look forward to hearing your story,
Todd Sparks, Sams Dad