Araya Love, Family, & Help Find A Cure!

***If you know us and share our page, please be sure to share with your loved ones your connection to us so that they know it is a personal referral! We have provided some updates, and be sure to watch some of the new videos at the end of this page to get to know us a little more! I promise you are guaranteed to smile many times if you watch the video of her sisters expressing their deep love for Araya! :) We cannot thank everyone enough for all the love and support we have received! We have had many people assist us with meals, groceries, presents or financial donations these prior 6 months, and we cannot express enough gratitude for all those who have helped us! We have felt so extremely blessed, and each gift has truly inspired us to stay optimistic and hopeful on this journey! We know our Lord has a plan in all of this, including the incredible connections He has create through these hardships! We are certainly humbled and feel so loved!***




Our sweet little “Araya Love” lights up a room with smiles everywhere she goes! People are smitten by her joy and happiness! This is even amidst her constant pain and struggles. Araya's prognosis is Rett Syndrome, as we continue to wait for genetic blood work to help officially diagnose. Currently, Araya has been diagnosed with Chiari 1 Malformation in her brain, dystonia, chorea, movement disorder, failure to thrive, sleep disturbances, breathing abnormalities and severe acid reflux.

Born as a healthy baby, and with what appeared to be normal development, suddenly at 6 months of age the family was informed that Araya was physically disabled and would need 24/7 care for the rest of her life. At 6 months of age she had suddenly stopped eating, sleeping, rolling, crawling and talking. She started very abnormal repetitive hand and body motions, breathing abnormalities, screaming episodes for hours from unknown excruciating pain, unwilling to sit upright properly in a seated position causing uncontrollable repetitive abnormal body movements, feet & toe curvature, frequent sudden back arching, has had seizure episodes, and many other abnormal symptoms. A nasal-stomach (NG) feeding tube was ordered that the parents had to replace on their own at least once a week, and about 3 months later she had surgery to place a Mic-key G-tube for feedings directly through her stomach, which has caused her great pain with many problems while it heals. She has recently had a hard time keeping her feeds down, and now again struggling to gain weight.  These conditions make it very difficult for Araya to consume and swallow any substantial amount of food orally, use her hands to properly feed herself finger foods, have control over her abnormal hand motions, be able to keep down food from her feeding pump or orally consumed, be in a seated position such as her high chair without doing uncontrollable body motions or abnormal positions of body and feet, be able to fall asleep and stay asleep without waking constantly (literally wakes 30 times a night), be able to talk or make baby noises or sounds that she was once able to do (the only sound she has been able to occasionally gain back has been “dada”, and has not been able to say any other babble sounds since November), be able to breath normally without extremely loud gasps or hyperventilation, constant concerns for her aspirating liquid or food into her lungs, sit or lay without constantly back arching due to acid reflux pain, has had episodes of self-harming, long and chronic screaming episodes of severe unknown pain, abnormal muscle stiffening, and balance issues causing her head and body to fall hard suddenly. With the help of medication and therapy she has been able to regain some of her abilities, but many other symptoms have not improved at all.

THIS is just the BEGINNING for her. The stories of other Rett girls who are older that have fought this disease longer would make these struggles seem small, as it is a lifetime of serious pain and struggles. It is only going to get worse from here, even if we may have our celebrations for tiny victories! And, any ability she has today may suddenly disappear tomorrow, so we literally take one day at a time and embrace whatever today brings! She has never been able to put a small piece of food in her own mouth even with her therapies, YET WE BELIEVE IN HER! The harsh reality is that she may never be able to, or if she does, it is pretty much guaranteed that she will lose that ability at a young age as her hand abilities continue to deteriorate, but that does not mean we stop trying! Most Rett individuals will need wheelchair accessible homes and vehicles, in-home nursing and respite care, special eye-gazing communication devices, medical equipment for daily use, and will forever need constant medical care. These are some of the ways that would financially help benefit Araya and her family currently, as well as in the future. She is currently waiting for insurance to approve her reverse walker due to her gait problems, a feeding and therapy chair that has been fitted specifically for her, and feet/leg orthotics. We have been informed that approval or denials take about 3 months, and then we must wait another 3 months for possible approvals through the state disability waivers.

The same morning that Araya was admit into the hospital to conduct many medical tests at 6 months of age, Mom and Dad found out they were expecting another baby! The parents had planned the pregnancy before Araya’s serious medical concerns ever arose, in hopes of finally getting a boy. This was after great heartache from losing their naturally conceived quadruplet pregnancy a few months prior to Araya's pregnancy! Recently, at the 20 week ultrasound, they were informed they were having another girl! The little one is welcomed with love and joy regardless of the gender! :) We are excited for our little bundle of joy that will arrive in a couple of months, but with Araya's special needs and waking numerous times every single hour of the night will present great struggles balancing both her constant needs, tube feedings, sleep difficulties and appointments while also caring and nursing a newborn. We have been attempting to get in-home nursing or respite care processed, but have been sent in circles with many wait times with no leads in the end. We are praying that in this following month we can finally get the right connections and approvals to get proper in-home care assistance for Araya as we welcome the new baby this summer! 

Araya is just shy of 1 year old, and has a long life ahead of her filled with a lifetime of pain, struggles and regressions. She was recently approved for state disability services, which will help with waivers for some of her special services. We are beginning the SSI application process, but have been informed to expect at least 6-12 months before it may be approved, which would provide only a small monthly financial assistance to the family who must care for her 24/7 for the remainder of her life. Currently, the family of 5 is financially struggling on only 1 income, when previously the home had up to 4 incomes to rely on. Father was forced to change employers less than a year ago due to a lay off, taking a pay cut at his new position. The father of Araya’s 2 older half-siblings is currently over $40k behind in child support, refusing to provide for them even while making over 6 figures. Their stepfather, Sean, has whole-heartedly stepped up and sacrificed to provide and care for them like they were his very own children for many years now. Our home is everyone’s favorite place to be, and Araya has bonded us all together in a deeper way than ever before. Meeka and Adora absolutely love their little sister and have a special connection with her due to her special needs! They are great helpers and have truly stepped up to be incredible big sisters!

Araya’s mother, Tracy, was forced to quit working and quit her Master's Program in December when told Araya was disabled and would need 24/7 care for the remainder of her life.  Araya's treatment includes numerous appointments! These include a neurologist, neurosurgeon, pulmonary specialist, Ear/Nose/Throat specialist, gastrointestinal specialist, rehabilitation physician, dietician, genetics counselor, chiropractor, feeding specialist, sleep specialist, occupational therapists, surgery specialist, disability case manager and a family physician. With these constant specialist and therapy appointments, serious sleep problems, constant feedings and medications through her feeding pump, and advocating for her changes in symptoms, it impossible for Tracy to work.

Fundraising efforts would also be helping provide these medical expenses, from taking trips to traveling far to specialty clinics, to the gas expenses to and from, and any medical expenses that insurance will not approve that is necessary to best care for her special needs. In addition, modifications we must make to vehicles or home in order to accommodate her special needs. This situation is not temporary; this is just the beginning of the road for Araya and the family. Therefore, our high GoFundMe goal is to successfully set up long-term fundraising efforts for the long road ahead for not only us, both the other victims of this evil disease! We are not wanting to focus our efforts on just short-term relief by only collecting funds from close loved ones (which is certainly helpful, too!), but instead focus our efforts and time at uniting together on a larger scale of bringing about greater awareness, support and financial assistance together. If we are smart about our fundraising efforts, the larger scale of awareness and contributions we could together unite are limitless! We want help to build fundraising teams to create challenges between workplace departments, organizations, businesses, sports athletes, celebrities, news stations, etc.

We are creating a logo for “Share-A-Ray-A-Love” to promote this cause! If you cannot afford to donate, we can relate! But, please help by “Sharing Love” around your workplace, residential communities, and social media sites! If you want to help donate time to help this cause, please provide your contact information to the email listed below, and we will create a volunteer team to create a website, social media events, online web meetings to share fundraising efforts, and how we can reach a global effort on helping not only this family, but globally to all the other loved one’s that are affected by this terrible debilitating condition! If interested in ways you can volunteer your time or skills, no matter where you live or your skills, please contact [email redacted]

Araya, and these other victims of Rett Syndrome, certainly deserve it! For them, every day is literally a struggle to survive! There is nothing that any individual did to cause Rett Syndrome, and it is not bias to race or any global location, BUT it is bias to NEARLY ALL FEMALES!!! These girls need YOU!!! The horrible disease of Rett Syndrome is actually significantly more common than people realize! About 1 in 10,000 births, one born ever 2 minutes! It could be your daughter or granddaughter someday. Numerous families fight this evil condition in your very own local city, and it is considered to be one of the very worst neurological conditions! Yet, Rett Syndrome is the FIRST neurological condition that has been reversed in mice!!! They are very close in finding a CURE!!! Until then, these precious children and adults, along with their families, fight this terrible condition every moment of every day! Basic needs of survival are often a struggle! Most will struggle constantly with eating, breathing, sleeping, speaking, walking, hand skills, digestion issues, heart problems, seizures, scoliosis, unexplained sudden death, and many more. Yet, these girls are often the SWEETEST you will ever meet even without the ability to speak or even use their hands to sign!

RettSyndrome.org is avidly working on finding a CURE, and they need us to help!
https://www.rettsyndrome.org/make-a-difference/donate

Please help us, and help us help RettSyndrome.org!!!!

These girls desperately need ALL OF US to help SHARE-A-RAY-A-LOVE!!!

Please LIKE, SHARE, VOLUNTEER OR DONATE!

THANK YOU!!!!!!!