Their Hope To Live - Help Batten Fighting Siblings
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We have been hit HARD, and sharing our story of our two kids with the world (aka our community) has been overwhelming but also hopeful & beautiful throughout this journey.
Our own Two Kids, Malachi and Maleea, were the first rare Batten's disease siblings in Washington to be diagnosed just as the pandemic hit the US in 2019 at Seattle Children's Hospital. Our needs have grown beyond our capability now. This GFM is for their future/Hope/Quality of Life and the great need for support.
The needs continue to grow, this list isn’t in any specific order, other than some needs are immediately needed and others are coming in hot for us, as we don’t get much time to prepare for change happening with both of them.
The ugly truth about Batten’s is when abilities start to fall away or disappear, and we are left with trying to process, grieve, and help Maleea and Malachi cope and provide the things they need the most.
We aren’t a flashing buy all the things family; we JUST want to give these two young adults now the ability to have the therapies they deserve to survive, the strength to carry on in their daily living, and have some fun moments, as we know this disease will take their life, and there is no date we are giving in advance as Malachi alone the only surviving Adult with this disease getting treatment and still walking, talking, drinking, eating by mouth (with feeding tube assistance) and barley seeing (yes going blind is a result of this disease). Maleea will follow this same progression. Soon, we will have two blind adults, two feeding tube dependent (which they currently are), two with dementia, two unable to walk, two unable to care for themselves, two will have MS symptoms, two will have Parkinson's symptoms two that will live with us, two that will continue to have brain deterioration, Two in wheelchairs (current new situation) two that have tremors, two unable to think for themselves, you see where I’m going with this… EVERYTHING is times two. This isn’t easy.
Reiff and I officially gave up our careers in their entirety this year, 2024, and we are feeling the financial strain more than ever being state caregivers in trying to get the best care for these Batten Fighting Siblings.
Let me share where these funds will be allocated.
The Costs can and are overwhelming.
OUR BIGGEST NEED FIRST IS TO BUY A SECOND VEHICLE
2nd Vehicle- 2nd Vehicle that is big enough for 2 Wheelchairs. Allocate to a second used vehicle (why are they still so expensive)
$10,000 -18,000
So we can house two wheelchairs & conquer different appointments up to 4 different major hospitals in WA. Seattle Children’s Hospital, University of Washington, Harborview, and occasionally Orange County Children’s Hospital in California for future studies/Trials /possibly the cure (as many of you know, we travel every 9 days for 6mo from Seattle to California for brain surgeries and treatment)
WISH FULLFILLED /Wheelchairs= $3700 x2 (already been reached & provided by amazing donors)
Malachi's vision has impacted his walking even more; he's falling on our stairs at home because he can no longer see them. We now need to start retrofitting a home for the blind.
**Do we now MOVE to accommodate accessibility of them walking around & Wheelchairs ♿️ in the future?? Still pending, but we need to look at moving for accessibility and better quality of life & therapies for complex adult kids
**Physical therapy - weekly at UW = gas & pay parking in Seattle & food + infusions and medical appointments
**Private therapies are not covered by insurance, but as requested by our medical team, we start ASAP as declines have been a lot this year for both of them
**Horse therapy is $1500 for both kids for only 10 weeks to maintain muscle
**Aquatic therapy $1000 for both kids - monthly to maintain muscle
**Massage therapy, possibly once a week, $100x2 - after infusions to help with new chronic pain (Dystonia)
**Warm water therapy is used for their nervous system as it is attacked daily.
**Lidocaine patches - pain throughout their limbs $150.00 per month because why insurance won’t cover it now. Says it's over the counter-option
**Yoga class for mobility/flexibility/stamina
**Possible cleaning service because I can't do it all.
**$100-200 weekly Meal service to keep Malachi & Maleea eating nutritionally regularly cause I'm not a superwoman.
**Practical items needed to provide basic care at home: medication bins, shower handles for walls, new lighting in the hallways, vision impairment tape on the stairs
**Adaptive devices, Adaptive equipment, i.e., Cell phones, adaptive watches, adaptive vision devices, adaptive Monitors, adaptive TVs.
Just the vision device alone to help see in their environment is $4300 WISH FULLFILLED FOR MALACHI OUR SON
Orcam Myeye 3 Pro - already funded by a fundraiser & purchased, but our daughter will need a second one in the future for our daughter.
**Hypervibe - $3200 Home Therapy Children with chronic diseases often have impaired motor function, which negatively affects their coordination, balance, and posture. In turn, this limits their ability to perform normal functions such as walking and can result in secondary disorders relating to the weakened state of their neurological, muscular, and skeletal systems. WBV is widely used by therapists to improve muscle strength, muscle mass, muscle spasticity, mobility, motor control, and bone density. Site (https://www.hypervibe.com/us/product-comparison/)
THIS is heavy STUFF…….
Dementia, MS, and Parkinson's are all wrapped up in this horrible Batten's Disease CLN2, and for young adults, it's scary, but the amount of care they will absolutely % need in the future is huge. I've seen families raising funds for medical beds and adaptive vans, which is a HUGE undertaking. We aren't there yet, but we know eventually it's coming. We don't get a day & a time. I'm highly organized by nature, naturally a self-starter & motivated, but this is wiping me out. Last year I took on 3 Xtra jobs to help with costs, I had to quit because I couldn't fully be there for them.
We will continue to fight alongside our Batten's Fighting babies (siblings). Still, we have decided to move forward with our website dedicated to Maleea and Malachi and their journey, and eventually switch to a 501c3 to help with more adaptive equipment and others battling this rare batten’s disease terminal diagnosis cln2 that will help young adults who get missed by the system.
We hope to attend our first Batten's Disease conference and several other patient-led rare disease conferences, at which we can partner with adaptive companies.
Our dreams aren't huge, our dream is to allow these young adults battling something terrible live a comfortable, fulfilled & 100% loving environment ♥️ that is willing to keep them moving as long as we can, and provide adequate equipment & education to feel like they can survive this. Reiff and I know they won't. That's what's so crushing. They WILL NOT survive this fatal disease until there is a CURE period.
We keep our faith in Jesus and our eyes focused on Maleea and Malachi's quality of life as we take on these Batten's challenges one day at a time.
We are still fighting for hope, but we also cry out for help in the same breath. It's a strange place to be and feel.
Thank you for helping us make a difference in our kids lives.
~Castillote Family
Follow our journey via https://www.caringbridge.org/visit/castillotefamily
Thank you .
WATCH https://www.kiro7.com/news/local/siblings-miss-crucial-life-extending-treatment-seattle-childrens-because-crowdstrike-outage/Y5EMEXGGQJE7PHDEAEKCWG6U4M/
❤️LEARN https://theirhopetolive.org
SUPPORT https://www.bonfire.com/store/batten-fighting-siblings/?utm_source=copy_link&utm_medium=store_page_share&utm_campaign=batten-fighting-siblings&utm_content=default
FOLLOW https://www.caringbridge.org/site/6e9a3c94-6918-334a-a497-15d7957d35a2?utm_source=share&utm_medium=webm&utm_content=copylink_leftmenu_php
Sabrina & Reiff & our family
Organizer
Sabrina C
Organizer
Lynnwood, WA