To help caregivers in communities, in homes, in hospitals, in the world have a better life! Helping those taking care of their parents, their family, and their friends to organize this amazing life. So that caregivers can have a better understanding of what you want in life. To better understand the medical aspect of your life.
is to bring assistance to families and young adults who have disabilities. Our hope is throughout this journey we will be able to provide that assistance.
To bring them transportation, housing, and living support needs that are not being met. I have met too many young individuals who have disabilities that don’t know how they are going to work, don’t know how they are going to get to work, how they can visit friends, don’t know where they are going to live.
Even though there are programs available, many young individuals with disabilities fall between the cracks. These young adults are motivated, they want to work. Young people want to be independent but are running out of options. How to get transportation, how to live on their own.
(the music in the background can be used in this video due to the fair use act)
Derek and Dylan’s Mom
My name is Kate by the way. 🙂 I am a mother of three beautiful children, two of whom are special needs. If it were not for these two amazing young men, this book would have never come to be.
I have been in the world of disabilities for my whole life. My family members have all sorts of diagnoses. While some disorders are noticeable, others are the kind you cannot see. Disorders such as ADHD and Bipolar that can make life a challenge. You can do it, you can make this a beautiful and wonderful life!! My thoughts, hopes, and prayers go out to everyone with any diagnosis, seen and unseen.
Derek and Dylan
Derek and Dylan were born with a rare Neuromuscular disorder called Pelizaeus Merzbacher Disease as well as having Mitochondrial’s disease. PMD Leukodystrophy is a progressive disease that affects the Myelin sheath so that neuro signals do not reach their destination in time or at all.
PMD Leukodystrophy is Characterized by:
- Abnormal head bobbing and rapid, involuntary, jerky eye movements (nystagmus),
- Abnormally slow growth, muscle tremors, weakness, facial grimacing, lack of muscle tone (hypotonia),
- Impaired ability to coordinate voluntary movements (ataxia), and/or impairment in the acquisition of skills requiring the coordination of muscular and mental activities, including delays in reaching developmental milestones such as sitting, standing, and walking
- Develop involuntary muscle spasms (spasticity) that result in slow, stiff movements of the legs and potentially partial paralysis of the arms and legs (spastic quadriparesis); abnormal, permanent fixation of certain joints (contractures);
- The progressive degeneration of the nerves that lead to the eyes (optic atrophy); and/or difficulty speaking (dysarthria)
If you would like to learn more about PMD Leukodystrophy please visit PMD Foundation and for family support please also visit PMD Family Support. PMD family support has an annual conference in Indianapolis and an amazing facebook group with parents from all over the world that have children with PMD Leukodystrophy.
That is a lot of big words I have had to learn so that I could take better care of my children. To understand what is happening so that I can work to make those parts of their life better or easier.
Mitochondrial Disease is Characterized by:
- Poor growth
- Loss of muscle coordination, muscle weakness
- Neurological problems, including seizures
- Autism spectrum disorder, represented by a variety of ASD characteristics
- Visual and/or hearing problems
- Developmental delays, learning disabilities
- Heart, liver or kidney disease
- Gastrointestinal disorders, such as severe constipation
- Respiratory disorders
- Increased risk of infection
- Thyroid and/or adrenal dysfunction
- Dysfunction of the autonomic nervous system
- Neuropsychological changes or dementia characterized by confusion, disorientation and memory loss
You can see that is a lot to think about and work on. Or at least try to understand. Throughout it all, Derek and Dylan are amazing young men that are active, happy and love life. I cannot thank them enough for the amazing life they have given me.
To see some the sections included in The Book Of please click here Table of Contents