Love, Hope, Hydranencephaly


Seth is a remarkable child, who was diagnosed with hydraencephaly while in utero.  Despite the opinion of 13 doctors, he did not die right after birth!Seth2

As Seth’s neighbor explained to us, “Seth is missing 95% of his brain or more. By the miracle of god and the child’s will to prove everyone wrong he celebrated his 4th birthday this year (2017). Unfortunately with the child missing so much of his brain he cannot walk, see, talk, and has very, very limited muscle control, on top of all these problems he also has seizures  through out the day and night.”Seth3

Here is a little bit of Seth’s story, as explained by mother Michelle, in her Christmas message.

Merry Christmas to the wonderful Angels God sent to bless Seth and me.  I am writing to share a bit of our story with you and thank you for blessing us with your kindness and generosity this Christmas.

It was at 15 weeks when I was told my unborn child had something very wrong and was told he had hydrocephalus, or water on the brain.  When an option to abort my unborn child came up I couldn’t do it.  I had wanted a family all of my life and this child was part of me.


After meeting with lots of specialists and doing research, the plan was for Seth to have surgery after birth to the fluid around the brain allowing it to expand.  The hospital in Boston has the most experienced neurosurgeon and I flew there at 34 weeks.  Seth was born at 39 weeks.  I named him Seth after Adam and Eve’s 3rd child.  A few days after birth, Seth had surgery to remove the fluid.  There was a lot of waiting and a lot of tests after the surgery to figure out why his head was still full of fluid.  Finally, at a meeting with 13 doctors they showed me Seth’s MRI, which showed he was missing his brain and fluid was in its place.  This is called hydransephaly.  I was told it was extremely rare and that he would not survive.  I had him baptized and we spent two weeks at the hospital in Boston.  I decided to fly us back home so my family could meet him and help plan his funeral.


Seth is a true miracle!  Born missing his brain and expected not to survive, but this courageous boy just turned four!  Not unlike the miracle of a son born to a virgin who was born our Savior to save those who believe in him.


We have had many challenges these last four years, but I want to share what a miracle my son is.  He is the most beautiful boy in the world.  How blessed and proud I am to be him mom.  No ounce of sin in his soul and he defies the odds of needing a brain just because doctors say he does.  But God has this little boy here to prove miracles happen!  Believing is important and even when you are in the dark and can’t see; trust that God is with you (I know, easier said, than done.)


When I start to doubt, God brings someone in our lives to remind us that we are His children, all of us!  Those of us that are born with no brain, or geniuses, short ones, bald ones, rich ones, thieves, drug addicts, divorced, or most beautiful,  strong in faith or those lacking, even the red, yellow, black or white.


I could go into the details of what you have done and the goodness it brought in our lives but I truly believe you know what it means to us and why your hearts called you to bless us in this way.  All I can say is praise God!  And thank you so much!  You have a lifelong memory in our lives.  Someday I hope to repay another with you in my heart.


Seth in Therapeutic Merry Muscles Exerciser. Love & Hydranencephaly!

Seth has defied the prognosis for hydraencephaly given by those 13 doctors!  Michelle has a strong faith, loving heart, and cares for Seth full-time at home.  Because of her limited income,  a very kind neighbor located and purchased a Merry Muscles Therapeutic Exerciser for Seth in 2015, which he has used for over 2 years, and really enjoys.   His exerciser has special “wings” on the seat, to give him the needed head support.  There are many straps to adjust for comfort and growth. Make a Wish has now given Seth an Aqua Creek swim therapy spa, but he needed a child-size seat to fit on the lift that holds him in the pool.  A special Merry Muscles aqua seat has been made for Seth, which he will be testing.

Seth’s story can inspire us all about the difference made by love, kindness & faith!  He has his own Facebook page:  Seth’s Journey with Hydranencephaly.  Soon we will put more pictures of Seth on this page too!


Jesse gets his feet dirty for the first time!

Jesse with winged head/neck support therapeutic exerciser that has a pelvic support to hold him upright.

This story is about Jesse, a child living in British Columbia, Canada.  At the age of 19 months, he was assessed as having the functional level of a 4-month-old.  He had seizure disorder:  infantile spasms, visual impairment, and development delays.

As he was unable to hold up his head, he required support wings on his exercise system.  After a very short time using the Merry Muscles Therapeutic Exerciser, Jesse’s head control was within normal range and all-around muscle tone was significantly improved!


His mother said:  “This exerciser is the best thing we have ever purchased for him.  He just loves it.  He is able to get the feeling of having his feet on the ground.  I put different textures under his feet, like a sheepskin rug.  We also hang it from a tree out in the yard.  It’s the first time he has ever had dirty feet!”


“Jesse has always had a lot of energy, so he is able to work some of it off… sleeping better…. because he is exercising.  Also he seems less irritable.  He was frustrated with not being able to do anything.  Being upright is good for helping clear any secretions so they don’t build up in his lungs.”


Jesse’s mother was also thrilled because he is safe and happy in this position and she can do other chores guilt-free.  She continued by saying, “Jesse’s neurologist commented on how strong he is…. On the days when he is having a lot of seizures he only uses the bucket seat.”




Cerebral Palsy Exercise Therapy


There are many forms of physical Cerebral Palsy therapy and treatments that can help reduce the physical disabilities associated with Cerebral Palsy. Each child or adult with Cerebral Palsy will often need a specialized kind of therapy treatment.

The Merry Muscles Therapeutic Exerciser (previously known as MEAS) is one option for physical therapy that a child or adult with Cerebral Palsy special needs may be interested in and has had very beneficial results for cerebral palsy treatment.


The MEAS is exercise equipment that is suspended from the ceiling with a body support for physical therapy. This allows a child or adult that has little muscle control or no use of their legs to actually be put in an upright position (supported standing), or a sitting position where they can move or move with assistance for physical therapy. For example, swinging.

The physical and emotional benefits for a child or an adult with cerebral palsy are many, including much enjoyment for the child or adult just from being in an upright position, or from the swinging and other possible physical movements.



Remarkably, the muscle movements in the MEAS result in LESS spasticity! 3 to 5 minutes of gentle bouncing therapy, followed by swinging, invariably will relax tight elbow joints and clenched hands will open up. The Neurophysiological reasons for this change have been well documented in research studies about using rebounders for therapy and treatment.


The upright swinging, gentle bouncing, and supported walking movements are not only beneficial exercise, but the users find much joy and happiness added to their day!

People with disability-they deserve to be happy.

This is a heartwarming and uplifting article about the spirit and courage that people with disabilities have!  Read the full story by Nash Christmas (Open Source), and feel inspired!

Open source

Good morning,good afternoon,good evening and good night everyone who read my blogs.No matter what time of day it is, make sure to enjoy the most you can.

Today i will not write a new story,a wanted to get back on my regular subjects,but i will write a new story maybe tomorrow 100% for sure in Friday.It is great to change usual things you write every day,popping up with something fresh and brief.Also we are having fun when we write, don’t you think ?

Let see what we have for today.

Our lives are hard.Everyone think’s their problems are the worst.But some people deserve more attention,more understanding and more love.People with disability.

Blind,deaf,people in wheel chair and so on are types of human who didn’t had that luck to be perfectly healthy.After their birth or by some accident they’ve got disability who made their “steps” harder than they are.They don’t want…

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Donna, muscle contractures


Donna, age 45+. Severe learning disabilities, with muscle contractures that used to make one foot turn inward so that her sole was almost parallel with the bottom of her bucket seat board on the exerciser.

Her therapeutic exerciser was donated by some ladies who collected pull-tabs for three years and then turned the money over to the manufacturer to cover partial cost of the materials, while we donated the labour and the rest of the materials.

This group home has a circular track in the ceiling. The staff use C-clamps to stabilize the top pulley while they do swinging, bouncing, and muscle-stretching techniques that have not only overcome contractures BUT also have produced a lady who is MUCH MORE aware of herself and her family when they come to visit her.

Jimmy, cerebral palsy, swings outdoors.


Jimmy, age 3, Cerebral Palsy, sight impaired, using the Merry Muscles Therapeutic Exerciser. At first he was apprehensive even with his mother holding his left hand while she pushed on his chest, but look at him smile at the feel of the wind in his face while she lets go of him and just pushes his arm to keep him moving. This normal 1-2-3 MEAS is a perfect size for him and very easy to connect to his outdoor swing set.


Cortical Blindness


Cortical blindness is the total or partial loss of vision. Although Cortically blind and Cortical visual impairment are basically the same thing usually if there is full vision loss it is referred to as cortically blind while if there is only partial vision loss it is referred as cortical visual impairment, CVI for short. Neurological vision impairment is also another medical term used and often one of the three terms are used depending on where in the brain the visual damage is affected.

Cortical blindness is not due to a problem with the eye, but is caused by the brain not processing the proper kind of information from the eye due to damage to the visual area in the brain, called the occipital cortex. The eye may appear normal and have normal reflexes like dilating and constricting in response to changes in light to the eye. This is because responses to light is a reflex.


What causes Cortical Blindness – Cortical visual impairment (CVI)?

There are many causes for cortical blindness, the most common is loss of oxygenated blood flow to the occipital cortex from either unilateral or bilateral cerebral arteries.

Other causes include stroke, surgery, head trauma, meningitis, some prescription drugs used to treat epilepsy can cause cortical blindness.

Symptoms of cortical visual impairment CVI, include visual ability that varies from one day to the next, depth perception, discrepancy in vision between the two eyes. The discrepancy in vision from one eye to the other will sometimes lead to one eye becoming more dominant while the other eye becomes weaker due to not relying on it as much. Due to the difficulties in depth perception, physical movements are often affected. For example, reaching for things will be impacted by lack of proper depth perception.

Some children and adults with CVI experience hallucinations and denial of blindness. Cortical blindness is often associated with cerebral palsy and different types of developmental delays.

Some children and adults suffering from cortical blindness are able to see moving objects but not stationary objects, while other cortically blind children or adults may be able to read a book but can not tell the difference between different faces. Some may be sensitive to bright light or like to stare into bright lights. Often sufferers of cortical blindness also have a delay to responsiveness to any visual stimulation.

Some sufferers of cortical blindness may rely much more on their peripheral vision than their central vision. Since much of a person’s activities and vision comes from the central and not peripheral spheres of vision, this may be why during therapy they may give inconsistent results to responses of visual stimuli. Often children or adults with cortical blindness are attracted to movement of objects in their peripheral vision.


Is therapy for Cortically blind or Cortical visual impairment possible?

Since cortical blindness and cortical visual impairment is caused by damage to that part of the brain that perceives images from your eyes, it is possible that partial vision may recover. It is also possible that sufferers of being cortically blind or cortical visual impairment may have this problem persist over a lifetime or fully recover.

There is no exact way to predict if a child or adult who suffers from being cortically blind will recover their vision. Every child or adult will have different vision problems, some cortical blindness may fluctuate on a daily basis between being able to see well to not being able to see as clearly as before.

Cortical blindness does not affect all children and adults the same way. Some sufferers of cortical blindness may recover fully while some people may recover vision partially with proper therapy.

Visual stimulation of the peripheral vision in recent studies has shown improvement in vision for children or adults that suffer from being cortically blind.

There are many different ways to help treat a child or adult who is cortically blind. It may not be possible to say that one thing alone will help. It will take a lot of patience and trial and error to find a therapy that will progress toward better vision. Through different therapy, once you find something that is helping the child or adult’s vision, it’s always best to use more of the therapy that is getting the better results as some therapies may just be not effective in helping regain better vision. When assisting a child with cortical blindness therapy, it will always be important to wait several seconds for a response to any visual stimulation and carefully interpret if that visual stimulation is working. There may be only a very subtle response from a child with cortical visual impairment, it may be difficult to tell whether they are responding to the visual stimulation.

Any type of cortical visual impairment therapy will have to be treated patiently as usually someone who has CVI will take a while to recognize even simple objects and faces, even after repeated exposure to the object or face. The process of recognizing an object to a child or adult with cortical blindness often will involve touching the object as well, often repeating the process of touching than looking. It may be hard for them to touch and look at the object at the same time as this may be too much information for them to process causing over stimulation.

Using the Maribelle Exercise Assist System may help someone that has cortical visual impairment. Movement is thought to help cortically blind people and we have had very good feedback from some of our clients noting visual improvement after therapy sessions in the Maribelle Exercise Assist System.