I often see commentary in the news and online that medicaid is for the "poor". Often times, people seem to forget that Medicaid is also for the sick and the disabled, too.
Abram qualifies for Medicaid under many different umbrellas including having an intellectual disability and an acquired (congenital) brain injury called cortical dysplasia.
We have private insurance on top of having Medicaid because without it, we would literally be hundreds of thousands of dollars in debt to medical bills and therapies if we didn't.
Medicaid covers what our insurance does not - and in today's world and market - insurance providers are denying him standard care including his ability to have access to the therapies that teach him basic life skills like walking, using stairs independently, how to communicate with sign language, iPads, PECS, etc.
The fact that people want to take my son's health care away from him hurts my heart in a deep dark place. Families like ours already have to fight tooth and nail to give our children a sense of normalcy and to be able to do all the little things that most folks take for granted.
What is being proposed for Medicaid at the Federal Level is looking grim for kids like Abe. They want to change the way Iowa is paid for the Medicaid program, so instead of the Federal Government paying a portion of EACH state's medicaid costs - they want to cap the amounts allotted for each state and pick and choose who gets the help. Why? Because they "believe that states will reign in fraud and abuse if they know the amount they will receive is finite and not based on enrollment."
With no laws preventing corporate insurance companies from discriminating against my son for his pre-existing conditions we count on Medicaid to have our backs. Without it, families like ours will be bankrupt. Children will suffer for it and will in the end be an even bigger burden on the state.
Iowa has already "privatized" Medicaid and I can tell you first-hand what a nightmare it has been. Children are being refused services and access to life-changing therapies. Sweet little kids who need help are being denied wheelchairs and kids like Abram are being told that they aren't making improvements fast enough for their liking so they don't want to pay for therapies at all anymore or that people who have severe and chronic pain cannot go to the ER for help.
Step up, speak out and do something to help. Write to your Senators and tell them how you feel about it.
Abram is TWO YEARS SEIZURE-FREE on cannabis oil and it's been 7 months since we weaned the last pharmaceutical from his body. Back then, our family hit our rock bottom after traditional pharmaceutical drugs not only failed - but further harmed our son. We had physicians telling us that our son's condition was "over their head" and eventually pointed us in the direction of Colorado and Cannabis.
Since then, we have learned an official diagnosis of all his symptoms: UBE2A Deficiency Syndrome, a rare genetic condition that affects only boys and of which there are under 40 reported cases in medical literature worldwide. We also discovered that the fundamental cause of Abram's seizures and intellectual disability are due to a congenital abnormality in his brain called cortical dysplasia.
We spent the first three years of his life in and out of emergency rooms, had numerous and lengthy hospital stays due to seizures, pushed for therapies and fought tooth and nail for something (anything!) to go right for Abram. He suffered immensely as an infant - always seemed to be in pain, never slept and was self-harming as soon as he was strong enough to get up on all fours. He was written off as a "colicky baby" and I - "a worried, first-time mom". To the parents struggling out there: trust your instincts and NEVER be afraid to tell a doctor NO or get a second (or fourth!) opinion.
After we started Haleigh's Hope: we have had zero hospital stays due to seizures, we have had NO ambulance rides, we have weaned all of his pharmaceutical drugs and Abram was able to start pre-school in an integrated classroom. Every appointment since we started using cannabis has been a major improvement. The cystic lesion in his brain has stabilized, his kidneys are functioning perfectly, he is finally ON the growth chart (and even a little chunky when before he was way too little). He's grown over 4 inches in the last year when our Endocrinologist had actually encouraged us to do growth hormone shots just a year ago (to which we declined - as both his parents are short and his condition includes short stature). But.... he GREW. He's on the charts.
He's also saying "MAMA" after having lost it to Klonopin and seizures over two years ago. He has worked SO HARD and I have waited so long to hear his sweet little voice say my name and there is absolutely no question in my mind or my heart that cannabis is the reason for all of his improvements. (Well, cannabis and our dedication to outpatient therapies every single week for four years!)
My little boy can run, ride an adaptive bike, jump and play - all thanks to a plant. Cannabis gave us hope when we had none and we will forever be grateful to the people we have met and the journey this crazy ride has taken us on.
Having a child with a rare diagnosis and special needs can be isolating and scary but Abram has shown me a world filled with love, determination and kindness. He has led me to an entirely different life and I couldn't be more thankful for it. This little boy was put on this Earth to teach me how to love, forgive and fight hard for what I believe in.
Before Cannabis, he had a lifetime of being told what he wouldn't and couldn't do and now he proves everyone wrong! He continuously improves his goals and smashes them to smithereens. Abram is my own personal little hero - proving to me everyday that there is always hope, love and lots of hugs if you know where to look.
To Jason Cranford, thank you so much for creating something that is changing so many lives for the better and for giving me my son back!
Much love, Friends. We couldn't be luckier or happier. Cannabis IS medicine.
What we use for Abram:
For those of your curious about what kind of cannabis oil/products we use for Abram, we use an organically grown from Colorado called Haleigh's Hope that is c02 expressed.. We also added in Cannatol RX last summer to try and help Abram with his self-harming issues and restless nights. With Haleigh's Hope, Abram became seizure-free and cognitively way more aware but we still struggled with major behavior issues.
Before we added in the Cannatol, Abram would sit in his bed and night and slam his body around for up to two-three hours and slam his face and head into his crib slats. When he got startled or upset he would slam his face into the floor, concrete, an end table - anything that was near. He most recently lost a tooth due to damage he did to it over a year ago but the Cannatol RX has helped immensely with his difficult self-harming days and his sleeping. Since the video below, we have also gotten a Courtney Bed so if/when he does bounce around - he is at least safe and cannot bloody or bruise his head anymore.
When we first started our journey - we did not know what we were doing and we used a product that we later found had lead in it. Then we met Jason Cranford and our lives changed for the better. I've learned a lot and his team that work for his non-profit the Flowering Hope Foundation have spent countless hours teaching me about cannabis and how to best advocate both at the state and federal level. Sebastian Cotte is their National Business Director and he has helped me immensely by teaching me how to advocate and how to speak with my Senators and Congressman in Washington DC.
The best part? Haleigh's Hope also has a private group where you can meet and chat with other people about what you are going through and who are using the same products. The staff teach you how to dose and what medications could possibly interact and how to approach your doctor with knowledge and confidence.
If you are thinking of trying "cannabis oil" - please be sure to purchase a quality product for your loved ones. We get messages often about how certain local drug or grocery stores have "CBD OIL" but I always let people know that not all products are the same. Before using anything - be sure that each bottle has a batch number on it and labs that match and prove that the product is safe and free of harmful contaminants like pesticides, mold and heavy metals like lead.
We personally only trust the products that Haleigh's Hope and Cannatol RX make. We have been able to personally meet the people who have helped my son have a better quality of life and see where his medicine is grown. I like the personal level of care that you get with Haleigh's Hope/ Cannatol and how they help people in their darkest days see the light and HOPE that is offered in their oils and sprays, literally.
I originally titled this piece "Seizure Free on Cannabis" not thinking that I should share the exact thing we are using as people could blindly go buy bad product and never see the results that we see. I do not want to further perpetuate that all oils are the same or have people believe that they can go to a health food store or a vape shop to get these products. They are NOT SAFE, friends.
Please, be careful with what you choose to put into your child's and your loved one's bodies. We decided on an organic c02 expressed product because that is what was best for Abe. Haleigh's Hope and Cannatol RX are specifically what changed our lives and everyone should know what has given us our boy back.
Thank you, Jason Cranford for all you do for our kids.
It is the end of Rare Chromosome Disorder Awareness Week. This is the 2nd year we have participated in this social media gig and I am beyond thrilled to announce that since we began sharing Abram's story via this website and social media that we have officially been able to connect with FIVE other families who have had boys with UBE2A Deficiency Syndrome like Abram in - addition to the very dear micro-biologist who published the first case study on UBE2A.
UBE2A Deficiency Syndrome wasn't discovered until 2006, so when our geneticists found that this gene was the root cause of all of our son's numerous medical conditions, we were shocked when they told us that Abram's was the first case they have had and that they would officially be learning from Abram. I immediately joined Unique - Rare Chromo's website - which is a support network for parents who have the worlds most rare diagnoses. I filled out all the information about Abram's diagnosis and suddenly, I was connected with one other family in the UK that also had a son with UBE2A Deficiency Syndrome! I also made sure that this website was coded appropriately so that anyone searching for UBE2A Gene Variations could find us and before I knew it, the person who wrote the first case study found us and within another year - another family had found us!
Learning that your child has something so rare, comes with a great deal of shock, anger and fear. For me, the shock wore off quickly as I had fought for over two years to get a proper diagnosis! I felt angry because not only does your child have a rare diagnosis but due to it's rarity the community support simply is not there. That is not to say that we don't have an excellent support system and a massive group of people who truly love and care for our son - but that unlike many other families with special needs children - we don't have that community of kids with similar diagnoses to try to relate to - and that in and of itself is very isolating.
Rare Chromosome Awareness week is so important for us and for Abram because it gives us an opportunity to raise awareness for UBE2A Deficiency Syndrome. Many negative things can come out of social media but it most definitely can help families in situations when families like mine. Without the internet, we would not be able to connect with the families around the globe who have the same diagnosis. So far, less than 40 cases have been reported and we (as a group of parents) have collectively only been able to find and connect with six other families (not counting ourselves) and we are hundreds and thousands of miles away from one another - either on the other side of the country or the other side of the world from one another.
It is so important to make connections with ALL people who make an impression in your life but there's something even more special about connecting with people whose children have what your child has and who can give you a glimpse into the future and show you exactly what hope looks like and to also grieve and feel broken hearted for the mamas who fought their children's whole lives being alone and not having the connections I am so very lucky to have with them, now. To that mama, thank you for being brave and sharing your story and your son's sweet smile with us. You have added three more families to the list of people forever connected to our lives and I couldn't be more thankful for what you have done or for your sweet boy.
If you or your child has a rare condition and you have not yet signed up for rarechromo's Unique Database, I urge you to do so. Before we had our "official" diagnosis, I was able to put in all my son's symptoms an other diagnoses and could still connect with families with similar medical conditions regardless of having an official name or answer to the bigger picture. It was nice being connected to other parents who had children with the same situation and symptoms, so you are not alone.
UBE2A has affected Abram in many ways and although it was a difficult journey to diagnosis and his medical history thus far has been a rocky road - I feel that we are finally coming into better days. He is learning to communicate (via an ipad and PECS), he is able to say "mama" again now (since March! I didn't want to say anything because I didn't want to jinx myself!), he is getting fast at running and has even conquered a rather large playground slide, just tonight.
Rare Diagnoses can be isolating, overwhelming and scary but the wonderful people and the love that comes your way when you join the rare diagnosis/special needs world is incredible. You end up meeting the rarest kids in the world, the coolest parents and people you will ever meet and children who are the sweetest, most loving, forgiving and kind-hearted spirits in the world.
Much love, friends. Spread the word!
Every summer my husband's employer has an employee picnic at our local theme park, Adventureland. Abram doesn't enjoy the rides (aside from the tea cups) as the hydraulics on the machines scare him and sends him into major sensory overload and he immediately starts self-harming.
Luckily, the park has a water park and being a summer baby - this kid loves the heat, being outside and doing water play. Most importantly, my husband's employer rented cabanas for his employees to enjoy this year so right next to the "lazy river" we could set up shop for the day under a nice shaded cabana that had a refrigerator, ceiling fan and access to the cold water, right there. Not to mention, a nice place to stop for breaks, eat lunch, and lather back up with sun screen.
Abram spent FIVE HOURS at the park this year which is his biggest record at sticking to and tolerating any type of activity. We did several floats around the lazy river, visited the kiddie pool with it's very own swim up "pub" which Abram loves because he has an obsession with garage doors and the openings of the concessions are mini garage doors. So, he would order us to take him near the concession so he could sit on the seats at the bar, demand the lady behind the counter put the doors down (to which we explained she could NOT) but she was sweet and played a pretty lengthy game of "peek-a-boo" with Abram.
Next to that is sort of a mini-American Gladiator water course where kids were trying to run across floating islands to get to the other side and Abram would squeal and squeal at the kids falling and splashing. He really wanted to try it himself but he is still much to small to attempt that type of thing! He just really has a great time watching other kids enjoy themselves as well.
Overall, we had a great day. Abram had a blast and NONE of us got sunburned... which was a plus as it was over 95 degrees. Super thankful for the cabana we got to use and even more thankful that Abram got to enjoy a day at the water park - doing an activity that we normally could not afford to do! It was SO MUCH FUN!
No matter what we have going on, I try to give Abram the best childhood I can in between doctor's appointments and therapies. I want his summers to be filled with lots of sun, fun with friends and family and making those little memories that last a lifetime for him. I've tried to make a "bucket list" of things to do with him this summer and most of them just include fun things we can most likely do the backyard (painting with squirt guns now that his fine motor is up to par as I've been dying to do arts and crafts with him), visiting a fire station and/or arranging visits from the Sheriff Deputy (who is coming for his 5th Birthday!) and mini-road trips to see Gramps n' Nana. Hopefully our summer involves lots of play dates and fun in the sun!
So far we've gotten to go visit my dad and his wife up in NE Iowa which is absolutely beautiful and spent time soaking in the hot tub with Abram, going to a flea market and taking a nice drive along the Mississippi River on a scenic drive. Other than that, it's been non-stop hanging out in our back yard where Abe's got a a little plastic pool he likes to sit in but we've already had to dump and clean it out numerous times due to "being torpedoed" as my dad calls it (aka - Abram pooped in the pool) or when he got so excited over the massive bubbles we were blowing that he just HAD to throw a potted plant in the pool for good measure right before our friend was coming to swim!
His highlight of his entire summer is of course the crazy swing up at my dad's house that he will soon grow out of. It's just a toddler swing but it hangs from a rope from a tree and goes pretty high/swings 360 degrees and Abram finds it 100% delightful.
We also had a random drive-by of the Weiner Mobile. It literally pulled into our development (which is literally in the middle of nowhere) and the nice man driving it just stopped outside our house! Abram caught a glimpse of that door opening and ran so fast away from the hot dog that I couldn't stop laughing. His dad and I were way more excited about this opportunity than Abram was. But it is something to remember for a long time, that is for sure.
Here are some photos of Abram lately! Enjoy!
This week, my mom and I traveled with Abram to go for his 2+ year follow-up with Nephrology for his Renal Fusion, also known as a horseshoe kidney. I always try to make the most of our little medical trips and book a room at a hotel with a pool so Abram can at least have a good time, swim and enjoy a meal out with us.
The drive to the University Hospital is about 3 hours from where we live and Abram's tolerance to long car rides is pretty slim. Especially since he officially broke his portable DVD player we purchased last summer for our long trek to Colorado to get his medicine.
We got a decent hotel rate and stayed at a newer hotel (vs the old "renaissance themed" hotel that usually has someone's old band-aids floating around in it) so Abram could swim and enjoy the hot tub before we went out for dinner. It's always hard picking a place to go so we ended up picking a "higher end" Italian-American Restaurant. In hindsight, I should have known better when multiple reviews said the food was "ok".
Poor Abram ended up getting sick there. I should have known something was up when he pushed his food away and started crying. He RARELY cries unless he's really in pain and he has an incredibly high tolerance for pain. I went to hug him and before I knew it - he'd barfed down my entire front and it was pooled in my arm. All they had for napkins was the nice white cloth ones and the sweet waitress ran over to help (shared with my mom that this happens all the time at the bar she works at) and didn't skip a beat as I piled vomit covered napkins onto Abe's plates. I was trying to get it off of me before I ran to the door but I couldn't get up until I had at least cleaned myself up - or it would have gotten EVERYWHERE but of course - Abram starts doing projectile vomiting in the booth. I try to catch most of it in the napkin but he was pretty much covered, the people around us were groaning and I couldn't get out of there faster. I was mortified.
I had to walk him out past a patio of customers as well who all stared and to whom I proclaimed "DO NOT EAT THE CHEESEBURGER!" I had to strip the poor kid down to his diaper to get him in the car and I just had to suffer - soaked in puke - until we got back to the hotel - which happened to have a cupcake shop underneath. I told myself I deserved a cupcake - so I walked in with my mostly naked toddler, covered in vomit and order myself a Chocolate Carmel Coffee Cupcake. Luckily, there weren't really any customers to have to see us.
The woman by the elevator definitely did a double take at us and had to sit near us the next morning when the "poo incident" happened. The next morning, we needed to get Abram to drink a lot of water so he could get his ultrasound and so the Nephrologist could get a urine sample. We go down to their free breakfast and got him to drink some water and eat a little breakfast. He flirted with the waitress/hostess lady like usual (he is a ladies man, for sure) and as I get him out of their fancy chair - realize that he's had the up the back poop explosion and not only did it come out both sides of the diaper in the back, but up the back of the shorts and half-way up his back inside his super cute new outfit that probably is 100% destroyed now. Yuck. What a mess. The positive? The shirt at least kept the poo off the fancy chair.
The actual Nephrology appointment went about as smoothly. We waited forever for someone to announce themselves a Medical Assistant and proclaim that they would be putting the urine collection bag only for her to disappear and not come back. The Ultrasound Tech was crabby about it when I told her they needed a urine sample and she made some crap comment about how she needed the bladder to be full to get the ultrasound. Yes, we know that. But Abram has NO CONTROL over when he pees. It only made sense to get it on before she pushed him around on the guts for his kidney scan. So half-way through - another nurse interrupts the ultrasound to tell the tech that they need a urine bag on him and that the Medical Assistant would be in afterwards to put it on. The ultrasound was taking a while, Abram was screaming his head off because sensory-wise he can't handle the feeling of that gel and being pushed around on and instead of being kind and calming - the tech just squirted more gel on him without warning him and sent him into another bout of screaming after he had just gotten calmed back down. People think I'm over exaggerating when I say he is a fighter but for blood draws/EEGs, etc it takes at least 3-5 people (in addition to me) to get him restrained enough to do a procedure and/or prevent him from hurting himself! I was so irritated. I don't get people who are in the medical profession who have no compassion or empathy for those they have to deal with. He was the FIRST appointment of the day - she should have still have some patience left before 8:30 am.
Anyhow - we wait forever for the Medical Assistant to put the urine bag on - and she never does show up. She interrupted the ultrasound about it - but couldn't bother to wait? We had arranged ahead of time that he would need this as he just can't give a urine sample like an adult. We finally get to Nephrology and they tell us that they need us to go to the lab for blood and urine. I remind them again - we have yet to get the urine bag actually ON and they say the lab has it. We get to the lab - and there was NO urine bag. We get escorted back to the appointment rooms and still - no urine bag.
When the Medical Assistant chick finally shows up I am already very frustrated and it's already been 90 minutes since we arrived and Abe has officially lost his sample to his diaper. She missed her opportunity for pee, did a terrible job checking his blood pressure (where he also screams so loud he dry heaves and often will vomit) and then promptly FORGOT to put the Urine bag on. Seriously? I had to tell her " you still haven't put the urine collection bag on, yet" and had to help her put it on as she tried to put the sticky part right on Abe's parts that shouldn't have sticky tape. She also tells me to put him on the table and without warning me (or him), has the table move up off the ground with a remote control. My son could have fallen and hurt himself as it startled him pretty badly. Good grief.
By the time the doctor came in, I was annoyed. We had to go through all of our medical history (3) times: once with the assistant, once with the intern and once with the Doctor where they proclaim that they have to REDO the blood pressure because it was high. "Well, he has major sensory issues and NO ONE takes his blood pressure anymore because they never get an accurate reading from the cuff. He screams, cries and dry heaves so of course it is going to be high. Other specialists use the one where they get the reading from his toe." But they proceed on to make my child scream and dry heave and finally decide that mom was right - they couldn't get a reading. Then Ms. Medical Assistant comes back demanding for me to check for a urine sample and seemed disgusted that there wasn't one and I make a snide comment about how he's only had it on for like 3 minutes.
I share with the Nephrologist my frustrations as they seemed pretty adamant on the phone that they needed a urine sample and made arrangements days before to have things ready for when we got there. I am more than able to put a darn urine collection bag on myself. It was important enough to make a phone call about, interrupt the ultrasound for but inevitably to not actually collect and obtain said urine sample.
In the end - we got great news. His kidney looks fine for renal fusion, is operating fine and we don't have to go back for another 3+ years which was good news for me. The bad news, Abram lost all that water we had given him at a restaurant on the way home during lunch and peed through the last of the (4) pairs of shorts I had packed.
So that friends, is a LOT of pee, vomit and poo to happen in less than 48 hours but just a taste of what it's like to have endless appointments and the now occasional bad experience in a doctor's office. The positive here is that we leave each appointment these days with good news and we keep just getting positive reports. I'll take all the gross body fluids for good doctor's reports any day but it sure makes for a good story.
Abe has been in Speech Therapy for almost three years now. I had no idea how incredibly hard it would be to find therapists that would be a good "fit" for Abram. We've had some great women come in and out of Abe's therapy life and for over a year we had a male speech therapist thinking that perhaps having a male influence would somehow help Abram connect. Unfortunately, that particular therapist felt that Abram had a "cognitive disconnect" and actually DISCOURAGED us from using sign language for Abram to communicate "because he is not Deaf" and told us communication devices would only be used in a school setting. So in essence, it seemed that perhaps he wasn't all that interested in helping Abram learn to communicate in the ways he needed to learn the most. This particular individual even told me that Abram couldn't get the idea that the object he was wanting our son to request could not be requested because he didn't get that the picture (PEC) represented that particular object. Man, he was SO WRONG and I am so glad that Abram told me that he was done with that therapist by constantly signing "all done" and shaking his head "no" before I finally got the hint and discontinued services with him.
After that, we trialled two other speech therapists and although we loved them both (and the one who came before them all who really helped him find his voice and his confidence - hi Kim!) - we chose the woman who Abram had the best connection with and whom was able to get Abram to not only vocalize multiple times the first time we met her but she also had him using a Twin Talk right away. I told her immediately how much I appreciated her and the fact that she clearly understood that Abram has a rare gene mutation that includes impaired/absent speech and that it is IMPORTANT for him to have numerous ways to communicate - not just ONE. For that, I will always be grateful. There are so many people (therapists, friends and family included) that have told me "speech will just come" or that Abram "just needs more time" but the simple fact is - he has a medical condition that makes it incredibly difficult for much of anything to "just happen" as he WORKS HARD for every gain he makes in all of his various therapies.
This week, his Speech Therapist introduced him to an iPad using the WeGo App and he was able to tell her that he wanted to play with a ball popper, that he wanted to blow bubbles and that he wanted to eat more graham crackers and drink water. THIS IS HUGE. HUGE!!!!! I was so excited I had to snap a photo.
We've spent Abe's lifetime literally being told all the things Abram will not do. I'm so lucky to have found someone who took the time to listen to my concerns and move forward teaching him not only how to make the sounds but to also use sign language AND a communication device.
This is exactly who we needed in our life to get our son to start "talking".
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
MOST POPULAR BlOG ENTRY