sharing life with autism

My dear family and friends,

Please help us take a very exciting journey with Hayden and our family.

Hayden is 6 years old and has severe, non-verbal autism. Hayden was diagnosed with multiple language delays, cognitive delays, motor planning and motor coordination delays at 1 years old and severe non-verbal Autism at age 18 months.
(read about Autism below)

Hayden is a beautiful, sweet, happy boy with a gentle soul. He loves nursery rhymes, being tickled, pushed on a swing, jumping on the trampoline and going swimming. He loves "goldfish" crackers and juice, buttered noodles and french fries. One of Hayden's most favorite things to hold in his hand is a straw, for this he will actually verbalize and ask us when he wants one. When he smiles it's like pure sunshine and can light up any room. From a distance all these qualities make him look just like any other child.

However Hayden is not like other children and does not have a normal childhood. He goes to school in a specialized classroom then comes home and goes into therapy, he works very hard, about 55-60 hours every week on building skills and language.
He does not know how to play or interact with other children. He does not know how to play with his own toys, he cannot dress or feed himself, he does not understand danger,he will wander away, walk straight into a busy road, he is drawn to water but cannot swim, he likes to climb up onto high places and jump, he cannot be left alone, even during sleep hours Hayden needs to be constantly monitored.
Hayden sometimes screams,cries and bangs his head for no reason that we can decipher, if he hurts himself or is sick he cannot tell us what is wrong, we always have to guess. Hayden has very little understanding of language, his developmental age is still approximately 1-2 years old.

Hayden has been working very hard since he was first diagnosed, utilizing a multitude of therapies, but they come with high costs. The leading evidence based therapy treatment is called ABA.
Hayden has received this style of in-home therapy since he was 2 years old. The average cost of this therapy alone is an average of $50,000 a year. For many families, insurance companies and states still do not cover Autism and beneficial therapies.

Hayden has a younger brother, Justin. He also has autism but Justin is considered high functioning and can speak. Justin also receives therapies including ABA in-home therapy.

Our home life is very busy and far from the average lifestyle, we don't run to soccer or baseball practices, we run from therapy to therapy, or we are running home for our in-home therapy program.
Our home is virtually a fortress with locks and alarms on what most people would never think would need securing.
Our home is set up to be the safest environment we can possibly make for our boys.

Hayden has an unbelievable opportunity; we are getting ready to travel across the country for a stem cell study that is underway. Only 30 children were randomized and chosen to participate in this study, Hayden is one of those chosen 30.
This study uses the child's own banked umbilical cord from birth. Fortunately we banked our children's cords at their births.
There is no danger for Hayden to participate in this study, he will receive his blood stem cells from birth through an IV infusion. Hayden will then also be cognitively tested throughout the year to monitor his progress. The FDA has approved this study.

This study comes at a cost, we are not paid they only reimburse $1500.00 in travel for the duration of the entire study.

Travel expenses, this is the greatest cost and where we need help.

Currently it is planned that we would need to travel 6 times across the country in 1 year's time. At an average cost of $500.00 round trip for 3 people, times 6 trips, the airfare alone is $9,000.00 in possible expenses. We estimate the total cost for the six trips to be close to $15,000.00.

Times are tough for a lot of people and our family is no exception.

We have been putting every extra penny back into our boys therapies, 2 home programs partially funded by insurance, psychologists, BCBA's, specialized doctors neurologists, genetics specialists, private speech, occupational therapies, "potty training" doctors, medications, therapy materials, diapers and special foods; they all come at high costs... higher than we could have ever anticipated.

Our hope???

It is to help our boys one day become contributing, participating members of society.

Can you please help us give our son an opportunity to be heard? To be helped? To be a success story? To potentially help other children, adults and families living with severe Autism with a possible treatment?

Thank you for taking the time to read about our family!

More importantly, thank you for helping our family help Hayden take this exciting journey!

Autism has no known cause or cure. Autism cases are steadily rising at an alarming rate. Autism affects 1 in 88 children, 1 in 54 boys and a child is diagnosed every 20 minutes. Although these statistics are based on children born in the year 2000 and only 14 sites reported in to the CDC, the CDC has now said they believe it is closer to 1 in 50 school aged children affected. The increase is 17% more cases every year.

The average cost across the lifetime of a person affected with Autism today is currently anywhere from $3.2 to $7.0 million dollars.
Prior to having children we would have never dreamed that there are parents, siblings, families living and struggling with this lifestyle.
All of the everyday challenges that come with raising a child with this debilitating disorder are exhausting and emotionally stressful for every member of the family. Equally hard for caregivers, therapists and special ed teachers who work endless hours to help these children.

Researchers have found that this treatment can help to improve language, communication and behaviors, with other disorders and disabilities.
Stem cells have also been found to help bolster the immune system which is greatly compromised in a lot of these children living with Autism. In our son's case he has had stomach issues with acid reflux since birth and chronic sinusitis along with ear, tonsil and adenoid problems. In the short time of his life, he has already had two separate surgeries.

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Jennifer DiMassimo Lundberg
Manchester Township, MI

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