Hunter OMS Warrior - Mobility Dog

$400 of $30,000 goal

Raised by 5 people in 26 days
Hi. My name is Hunter. I like to be called Kid. I am 13 yrs old. My mom says I am 4, but I am 13 and my name is Kid.

I like superheros, legos, books, playdoh, and movies.

I use the potty. I wear superheroes underwears.

I am shaky. I have a hard time walking and keeping my balance. My hands shake, so my mom, dad, and siblings have to help feed me. I go to the hospital a lot to get lots of medicine. I don't like getting medicine.

I need a special dog to help me walk by myself and to help me get things. It is hard for me because I am so shaky. I fall a lot. Would you consider helping me?


My son was diagnosed with Opsoclonus Myoclonus Syndrome (Dancing Eyes, Dancing Feet) in June of 2017. This is a 1 in 10 million condition that is so rare, most doctors will never see it in their lifetime. It took almost 2 weeks of a hospital stay and 2 misdiagnosis' later to get it right.

There is no cure.

One day, my son was a normal 3 yr old. The next day, he lost his ability to walk, talk, sit up, eat by himself, stand....or do anything a "normal" 3 yr old does.   

He has been on a regime of medication (chemo, IVIG, ACTH, high dose steroids, iron, antacids, etc) since his diagnosis.

He is 4 now. He has the truncal strength of an 18 mth old. He struggles with walking, running, standing sometimes, sitting, speaking, fine motor skills, self feeding. He also has OCD, severe PTSD, insomnia....this condition affects everything. He has good days and he has bad days.

Please consider helping us raise the funds to purchase a mobility dog, that can also help with his PTSD, through 4 Paws for Ability. This program allows younger children to reach their potential by placing a service dog with them. They also do not require us to relinquish our current pets. They want to enhance his life and allow him to reach his potential with a little help from a furry friend.

All monies raised will go towards this service dog and if there is any leftover, we will use it to make our bathroom handicap (that hurt to say) accessible, as Hunter cannot use any part of our bathroom because of his ataxia (shakiness).  We will need rails for the toilet and a shower that can accommodate a walker and have a bench.  We also need to lower our sinks to help him reach and can keep him steady and not hurt himself when he tries to go to the restroom, as he gets older.

Thank you, in advance and God bless.
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Hunter's shakiness has gotten a bit better in his legs, but not in his hands. He still struggles with fine motor skills and eating by himself. We recently got him a gait walker, that has a seat on it (he loves that), and he uses that when his legs are "tired". He is regressing in the potty training arena, which leads me to believe that we are going to be completely symptomatic soon. This has been his history since his diagnosis in June 2017. He is working hard in therapy. He gets very frustrated and very tired easily. Please feel free to share our GoFundMe page to your page or any of your social media. Thank you :)
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I almost used the "donkey" word cause that is how I feel right now. Progress with OMS is slow....like a snail moving from Alaska to the Florida Keys kind of slow. We have semi okay days and then crap on a stick days. Today has been a mixture of both.

Mornings are hard. He typically does not want to eat much and his OCD (from the OMS) is off the charts. He has to have every chair in place, every blanket in place, every shoe either in the shoe bucket or lined up, he has to touch every door and he chants the same sentence over and over and over and over and over and over (annoying, huh), and over again. When we say to stop.....it's almost like he can't. He hears me and he acknowledges that I'm speaking, but he can't stop himself from doing all these things. So, he usually ends up back in his bed, where the first rage of the day happens. I got part of one videoed today. It's lovely.

Then there are moments when he is super sweet and loving. He is almost completely potty trained (I think I'll do another post on that topic). He is doing great. It is tough because he can't stand still long enough to get his pants down and then when he bends over, he falls over, then he can't get stable enough to get on the potty, then when he tries to get up he shakes and knocks the pee in the floor....then we have another production. Still, he is almost potty trained and I view that as a score.

His therapy is tough on his little body. He is usually sore and flustered for a few days after. He is worse, muscle tone wise, then when he was when he was assessed the first time a month ago. We have a baseline and we ARE gonna move up....channeling those good thoughts. Another score was his speech. He speaks very choppy and staccato. He loses his words or has to think about them and he gets, again, very flustered. His SLP said that his articulation of words was that of a 5 yr 2 mth child! Very exciting stuff. She is going to treat his fluidity like she would stroke patient because OMS is neurological. Pleased to hear he has good articulation, though.

We've had to up his sleep meds...and yes...they help his sleep and his behavior BUT he began itching incessantly. It was pathetic. Everything itched and when I would hold his hands to keep him from itching, he would rub his face on anything he could get ahold of. We backed it back down and he isn't sleeping as well, but he isn't itching anymore either. There is nothing more mind numbing then when you have mosquito/flea bites or an allergic reaction and you cannot stop itching.

Tonight, we began our exercise routine. My goal is 2x per day, with the incentive of outside play for a bit. It is still really cold outside, so he cannot stay out for very long. If I can get more in, I will, but it is all in how well his mind and body tolerate it. We are doing ankle stretches, hip stretches, hip rotations, compression massages on his back, light massages on his bag and legs, bear crawls, sit ups, push ups, and crawling. The goal is to get his core muscles more stable and to gain some strength. We do not want regression we want progression.

I recently ordered his gait training walker and I ordered a weighted vest to wear so he can have some stability when he walks. We also use hand weights and weighted utensils. There is also this blue sticky stuff the OT gave us. It is reusable and you put on a surface and it sticks to that surface, then you put a plate/bowl/cup/toy on it and it stays in place to help from everything moving because of his ataxia. We got a thing to hold a crayon/pencil in his hand and some sensory things to squeeze for his hands. I want to be proactive because if I'm not....I'll crawl up in a fetal position and cry.

I ain't got no time for that.
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What is Opsoclonus Myoclonus Syndrome (OMS) /Opsoclonus Myoclonus Ataxia (OMA)?

Opsoclonus Myoclonus Syndrome (OMS) also known as Opsoclonus Myoclonus Ataxia
(OMA) is an extremely rare neurological disease which appears to be the breakdown of an autoimmune process involving the nervous system . While OMS can occur at any age, most cases involve children under the age of three years old. Most OMS children have a normal birth and development until age 12-36 months (average). At that point, something triggers the immune system into overdrive and it can’t shut itself down.

About half of all OMS cases occur in association with neuroblastoma (a cancer of the sympathetic nervous system usually occurring in infants and children). When the immune system cannot find a neuroblastoma, it begins attacking the base of the brain.

* Gross and fine motor functions affected
* Speech impairment occurs
* Vision (“dancing eyes”) problems are exhibited
* Severe ataxia (balance) problems arise

"Because this rare movement disorder is so unique, some neurologists may never see a case in their entire career," Dr. Pranzatelli – www.omsusa.org .

This disease affects roughly one child in 10 million annually, or about 60 people per year worldwide.

Signs and symptoms

OMS is commonly mistaken for other illnesses such as Cerebellar Ataxia or inner ear infections. Prompt diagnosis often determines the severity of the long term impact on the child. Symptoms of OMS include:

*[Opsoclonus](rapid, involuntary, multivectorial (horizontal and vertical), unpredictable,
conjugate fast eye movements without intersaccadic quick rotation of the eyes intervals)

*[Myoclonus] (brief, involuntary twitching of a muscle or a group of muscles) *Ataxia both truncal and appendicular *Dysphasia (a language disorder in which there is an impairment of speech and of comprehension of speech, caused by brain damage)

*[Mutism] (a language disorder in which a person does not speak despite evidence of speech ability in the past, often part of a larger neurological or psychiatric disorder)


*Irritation or malaise


*Strabismus (a condition in which the eyes are not properly aligned with each other)


*Sleep disturbances.

*Loss of balance, inability to walk

*Loss of fine motor skills


A child afflicted with OMS can quickly regress from healthy and active to a child who constantly cries, throws tantrums, and loses all sense of balance and fine motor skill. This regression happens seemingly in a matter of a few days or weeks.


About half of all cases are associated with neuroblastoma cancer, and most of the others are suspected to be associated with a low-grade neuroblastoma that spontaneously regressed before detection. It is hypothesized that a virus infection causes the remaining cases. OMS is not generally considered an infectious disease. OMS is not passed on genetically.

Treatment of OMS

There is no known definitive cure for OMS. However, several drugs have proven to be effective in its treatment. Some of the medications used to treat the symptoms are:

*Corticosteroids Used at high dosages, this treatment can accelerate regression of symptoms. Subsequent very gradual tapering generally follows. Most patients require high doses daily or every other day for months to years before tapering. These medications go by the name ACTH and Prednisone, to name a few.

*Intravenous Immunoglobulin (IVIG) These infusions are given on average every 4-8
weeks for years. Most OMS children are required to have an outpatient hospital visit for these treatments.

*Chemotherapy treatments include Cytoxin and biotherapy treatments include Rituxin at various levels and for various lengths of time.

*Other medications are used to treat symptoms without influencing the nature of the disease (symptomatic treatment. These include:
*[Trazodone] can be useful against irritability and sleep problems *Plasmapheresis ("washing the blood", showing similarities to dialysis for severe, steroid-unresponsive relapse .

Treatment of OMS should not be delayed. As soon as OMS is diagnosed, immunotherapy should be given, even before tumor removal. Surgical resection of the tumor may not help the symptoms of OMS; other treatment is usually necessary. Because chemotherapy is also immunotherapy, it should work to treat the tumor and the OMS. While “the cure” remains elusive, a handful of doctors are researching OMS.

Often, our OMS children are part of their research and their experiments in order to progress a cure. This often requires traveling great distances to meet with one of these specialists. They will often require spinal taps to determine the B cell and T cell levels of the child. Also, CT scans, MIBG scans, and other testing is normally a semi-annual or annual event for these kids. Once the specialist sets the treatment protocol for the child, they work with the local neurologist and/or pediatrician. At times, an OMS child may be working with a team of doctors including pediatricians, neurologists, OMS specialists, oncologists, endocrinologists, and others. When there is not agreement on treatment, parents need to resolve the conflict and the child normally suffers during the wait.

What is the Prognosis?

Remission may be more common in viral or idiopathic cases than in children with
neuroblastoma. Relapses frequently occur with minor illnesses; viral infections may play a role in the reactivation of disease in patients that are exposed. Children with severe opsoclonus myoclonus at the start have the highest risk of permanent neurologic problems. Other problems that may arise are learning and behavior problems, such as attention-deficit hyperactivity disorder, conduct disorder, and obsessive-compulsive disorder, which often require treatment with medications specific for those problems. These problems emphasize the need for early diagnosis and treatment.


Neurological symptoms may return during illness, fever, stress, sedatives or anesthesia, tapering or discontinuation of immunotherapy, and after immunizations. Because of the
susceptibility to relapses, it is imperative to keep OMS children away from sick individuals. What is a common cold or a flu bug can cause a relapse in an OMS child and send them back to the hospital. Such relapses are common and usually occur more than once. Rarely, many years may elapse between episodes. Relapses should be treated. Usually children who responded initially to immunotherapy will do so again, even to a single agent.

Treatment Complications

As much as we all would like to eradicate opsoclonus-myoclonus, overly aggressive
chemotherapy or immunotherapy can devastate the immune system, causing life-long aftereffects. Infections in children receiving immunosuppressive drugs must be taken seriously and receive medical attention early.

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Enough is enough is ENOUGH.

I, we, the whole family, has had enough.

As forward as I am, I have tried to step back and let the professionals do what they do best. I have tried to hard to not be the mom who does too much research and interject my opinions. I have been as good as I feel like I can be because I want the best care for my son.

Now, don't get me wrong. I like our current doctor. He normally responds to my emails (though not so much lately), he has agreed to confer with a specialist (Dr. Mitchell) in LA to bounce ideas off of each other. I've sent him my YOUTUBE channel to show him his progress. I've kept detailed records of daily symptoms after starting his ACTH shots.

I think it is time for me to be a bit more assertive. Probably much to his chagrin. I am going to be doing lots of homework on OMS and I'm going to be asking a lot of questions on my facebook support group. These people are a wealth of information. They have had success and they've had failures and I want to glean from them.

Our Current Issues

Constant Shaking. Worse after nap.

Opsoclonus is constant.

Inability to hold utensils and feeding himsef

Fine motor skills are struggling

Gross motor skills are struggling

Not sleeping well

Distinct speech issues

Glassy eyed wild screaming fits where his whole body stiffens.

OCD is rearing its ugly head

I believe he has had some acid reflux.


Not wanting to eat

Unsure of everything and everyone

There are many more issues....but my brain is shutting down. I will research each and every one of these things and I'm going to fight for what I believe will help him....even if it means stepping outside of myself and trusting Jesus and changes drs. There is a great dr in Boston and another wonderful lady in LA.

Big Daddy and I will sit down and evaluate his symptoms and how we can holistically help him or if we need help from the world of the medical field. We will discuss whether we will remain and trust our current dr or step out on faith and go to LA or Boston.

There will be nothing that will stop me from figuring this out. Nothing. God goes before me, He is behind me and He has me flanked on the right and the left. I also have my family holding my arms up and intervening on Hunter's behalf. I will not shy away from asking for prayer and specific prayer for him. This "condition" will not define my son. He will overcome. He will win. He will have no side effects. He will be the exception to the rule.

I'm done walking around the mulberry bush....never was my strong suit.....now, I'll do it my way (with God's guidance, of course).

Specific Prayer Requests

**figuring his sleep schedule out.

**kicking around melatonin or trazadone

**Switching drs.

**Work on rages and how to better handle it without me losing my shit.

**Asking for help more

**Not feeling guilty about taking time for myself to rejuvenate.

**He has a 3 hr assessment next week for OT, PT, and SLP...anxious for that and to see the results

**15-16 is set for IViG and Chemo

**Meeting with our current dr and me being bold (asking for CBC and FA testing) and not just agreeing to agree.
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A CaringBridge campaign

$400 of $30,000 goal

Raised by 5 people in 26 days
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