The ugly truth of it all is that this is hard. I'm so tired of fighting for everything. Ever since the moment that Abram came into this world I've fought tooth and nail for him to get everything he deserves from proper medical care and therapies to fighting for law changes for him to have medical cannabis - a drug our Neurologist told us to try but one our lawmakers feel they have a right to keep from him.
The truth is - I am writing this at 3:00 in the morning. I'm dead tired after 2+ months of no sleep but I couldn't shut my brain off. After being up most of the night with him - my husband went to lay with Abram in his bed so that I could get some rest - yet - hear I am - pecking away at these keys because it was either do this or sit in the dark and stew or cry.
People assume that because Abram has had success on cannabis oil that his life is "fine" and that he doesn't have to struggle anymore but that is far from the truth. Every day is a struggle for Abram. He has to try VERY HARD to do the things most people take for granted. Whether that be simply walking to the mailbox and navigating his feet on gravel or taking the steps downstairs to get to our level of the house. Today on the way to the mailbox, the Garbage Truck came through and after an incident at school where he started punching himself in the face as the dumpster was being lifted into the air and the loud metal sound (banging) sent him over the edge... I held him back in our neighbor's driveway so that he wouldn't run off or hurt himself. Instead he slammed his head into my wrist bone and tried to beat his little face with my hands as I held his so that he couldn't punch his face. The rest of the walk went fine but I have to constantly be on guard.
It is HARD to go places (like parties or the playground or play dates) with Abram because I so yearn to be able to sit and chat with friends but Abram requires my assistance 100%. I can't "just" let him go off as he doesn't understand danger, has no concept of the fact that digging in a drawer can hurt him, or that opening someone's closet and throwing everything out of it isn't actually a very nice thing to do. I can't let him walk down the stairs unassisted to play in the yard or let him loose on a playground because he will literally walk right off the platform - as he has no depth perception and doesn't understand that the big gap in the metal is for him to slide down a slide or a fireman's pole or to jump off of and he can get seriously hurt. Abram will be 5 in July and our home is still baby-proofed and once he out-smarts that we will have to opt for bigger, more expensive gear to keep him safe.
He also gets into what I call "loops" at people's homes where he finds one or two things that interest him and he continually goes back and forth in these big literal loops to do those exact things every single time. He remembers those loops and he sticks to them no matter what. It makes it hard to visit with anyone outside of my own home because I constantly have to follow him and make sure that he isn't getting into something that can hurt him. So, it makes having an adult conversation difficult at best.
It is HARD to see what other neuro-typical children are doing and although I know Abram is the BEST Abram that I know he can be - it is and always will be difficult to catch the glimpses of what-could-have-been. I don't stay there long and try my best not to linger on those thoughts but it is honestly a kind of grief that will ALWAYS be there and that is 100% okay and it is normal. It will always rear it's ugly little head and give me that little tinge of sadness but only long enough to remind me that Abram is Abram and he is so strong and so brave and fights so hard to have every little bit of freedom that he has. He accomplishes all the things that everyone else just takes for granted. Abram doesn't know the difference of *not* doing those things and since he's my only child - I've never experienced those things as a mom myself. Sometimes it's just hard to get those glimpses and wonder what he'd say to me if he were able to express things in that manner and I wonder if he yearns to play with other kiddos or if it's just not even a thought that crosses his mind. The not knowing kills me.
It is HARD to always be positive and keep a smile on my face when nights are long and days are hard and things are a constant struggle to keep and maintain therapies and doctors appointments and routines in place in our life. It is difficult to go nearly 5 years on little-to-no sleep and spending the very little downtime I do have fighting for everything that he deserves or defending myself as to why he needs such things.
Well intentioned people say some of the most misinformed things and for parents like me it's a constant battle to explain things well enough that people understand my son's medical diagnosis and that I don't just endlessly fight for his rights to have adaptive equipment and access to safe, legal medical cannabis just for shits and giggles but because he actually NEEDS it.
As Abram ages, it's getting a little easier for people (strangers) to see that Abram isn't "typical". That in itself makes my heart hurt a little. It's hard to take him shopping now if the store doesn't have the special needs cart because he's getting too big for the top of the cart and letting him walk through the store is honestly - too hard to do if you want to get out of there with what you went there for in the first place AND not have everything at eye level and below swiped off the shelves entirely.
I share Abram's story so people who love us can get a glimpse into what life is like for him and for us. I share his story so that everyone else who has a child diagnosed with UBE2A Deficiency Syndrome can find us and connect with us and have a little glimpse into our lives: the good, the bad and the ugly. I share it all because it's the only thing that keeps me grounded and it's brought such wonderful people into my life.
Throughout my ups and downs with emotions - one thing remains true: Abram is a fighter. He always has been and he always will be. He is stronger than anyone else I have ever known and he never gives up. He has his bad moments in a day but as soon as they are done - they are done - and he moves on throughout the rest of the day with a smile on his face. He doesn't linger on his unhappiness like we adults do. Abram has had to work so hard to do the simplest of things that everyone I know takes for granted and because of that - we get to celebrate all those little things, too. Abram is my very own personal little hero and a daily reminder that no matter what - life is worth smiling about.
Friday night was a long night for me as I stayed up all night long waiting to see the Iowa House debate a medical cannabis bill. I was hopeful that the original Senate Bill (that passed 45-5) would have been able to be debated and passed in the Senate but that did not happen. I am optimistic that what we will have in place now will be one giant step in the right direction.
The Iowa House and Senate fought through the night - I finally fell asleep at about 4am and woke up just two hours later from my friends messaging me that the debate was about to start. By the time I was able to think coherently - the bill had already gone from the House to the Senate and I had no idea what I was looking at.
What we ended up with is not what everyone has been fighting for - even our key friends in the legislature agree to that - but I feel that we are heading the right direction. We will now have growth and distribution of cannabis in Iowa with two manufacturers, five dispensaries and it was expanded from "intractable epilepsy only" to 15 conditions. Many conditions were taken from the bill which was highly disappointing as my best friend from grade-school suffers from EDS and her condition was taken from the bill's list. In addition, PTSD and Ulcerative Colitis were removed which hurts my heart for my friends who I have stood by at the Capitol and who have fought for this just as hard as anyone else. I just hope that the "untreatable pain" condition can be the umbrella that covers those whose specific diagnoses were left behind until the Medical Advisory Board can add those conditions back in.
The GOOD thing is that now there is a Medical Advisory Board involved. This is something that we have fought for as advocates to get. This simply means that there will be a board of seven physicians and one law enforcement person who will be able to add conditions, decide the method of administration and who will have the ability to suggest THC % increases to the legislators.
For me personally, I am pleased that we got this much at all. With everything that has happened the last couple of years I was terrified that we'd just get an expansion of the bill but still not be able to have access. Now we will have access here, we may get reciprocity with bordering states to get medicine while we wait and now Doctors with knowledge in cannabis will be guiding the way for adding conditions and changing the cap on the THC percentage for those who need more THC.
We've fought long and hard for this and although it isn't everything that we wanted - it is a step in the right direction and a compromise in the Legislature that we should be pleased even happened considering the political climate in Iowa right now. IOWA - the 30th state to allow the growth of Cannabis. It'd say that's pretty cool.
If you'd like to read the bill's text - I highly encourage you to do so. Be sure to click on the Klein Amendment on the drop-down menu to see it all. https://www.legis.iowa.gov/legislation/BillBook?ga=87&ba=HF524
This is a great news piece that shows the views from both sides of the aisle. Rep John Forbes is a Pharmacist and has been a huge part of my advocating journal personally and Rep Jared Klein who wrote this bill promised me he would not forget Abram's Story when I testified at a subcommittee hearing earlier this session.
Things are finally moving at the Capitol for Medical Cannabis. The Senate is fast-tracking a bill (SF 506) and will debate on the floor as early as Monday. This bill is actually exactly what sick and suffering Iowans need: it includes multiple medical conditions, a medical advisory board as well as growing and distribution in Iowa as early as 2018. It flew through the sub-committee and full-committee hearings this week and will hopefully make it off the Senate Floor as early as Monday.
I'm trying to remain hopeful but it's hard knowing the Houses's stance on medical cannabis and what their opinion is on what percentage to cap the THC. For some reason, many Representatives in the House have been quoted as saying that they won't allow more than 3% THC and claim that there are proven trials showing that this is the key amount of THC used before people get "high". Sadly, this is untrue as many people with cancer and other debilitating diseases NEED more THC.
In fact, the children with Epilepsy (like my son) that they use as an example of "only" needing low THC oils actually NEED more THC in many instances. I for one would LOVE to have access to products out of Colorado called Cannatol. Cannatol makes several products including a nasal rescue spray for Grand Mal seizures and that product is 5% THC. So people in Iowa who have children with Grand Mals wouldn't even be able to use that as a rescue med because it has 2% more THC in it than some House members feel we should have access to. The option for rescues instead are heavy duty benzos that have to be administered rectally and leave children in a drug induced phase for days vs being able to come out of a Grand Mal quickly and with no side effects like the kiddos shown in the viral Cannatol videos.
Here is a video of Cannatol being used:
Here is a video of Diastat that is used for emergency rescues. Please watch and ask yourself if you were in this situation - would you want to have the right to try a nasal spray vs a rectally administered rescue medication? Diastat is extremely sedating and is most definitely getting children "high".
I will remain hopeful that the House will do the right thing for families like mine but with the comments that have already been publicly made in regards to this bill, I think that perhaps all they are willing to give us this year is a removal of the July expiration date... but we shall see. I attended House Speaker Linda Upmeyer's Legislative Forum on our way home from MN a few weeks ago and she claimed to not be against growing/distributing medical cannabis in Iowa. I hope that she and the Leadership decide to do the right thing for those who suffer and for those of us who have children who need safe, legal access within their own state's borders.
Here are some articles for reference:
We just learned that there is a Rare Patient Advocacy Summit in Irvine, CA this fall during September 14-15. Many of you who visit this site often know our story and know that Abram has a rare diagnosis called UBE2A Deficiency Syndrome. It is quite rare and there are only a handful of people in the world known to have this condition. The individuals we read about in the case studies all live in foreign countries and are not available to speak to due to language barriers and/or the desire to even speak to others about their children's diagnosis.
Through this website, I was lucky enough to not only be contacted by the micro-biologist who wrote the first Case Study on this Syndrome - I have also been able to find two other families with young boys who are also living with UBE2A Deficiency Syndrome. One child lives in the UK and his mother and I are in regular contact via e-mail. The other boy - about 2 years younger than Abram lives in California and just 5 hours from where this Summit is going to take place!
His family will be attending the summit as well and we would all very much like to meet, have our boys meet one another and be able to meet the only other family in the country with a child living with UBE2A Deficiency Syndrome. It would mean the world to me to be able to attend the conferences at the Global Genes Rare Advocacy Patient Summit so I can learn how to better advocate for Abe but to have the opportunity to meet Abram's UBE2A "brother" would be life changing.
Please take a look at our fundraiser and if you can, please spare a few bucks to help us get there. It means more than I can even explain in words. Thank you.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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