Fundraising for Johan, Celia's Grandson
4 JUNE
Hi friends!
On June 21, the family needs to pay the huge insurance bill of $1850. From the generous donations they have received and the money they have saved, they are only $800 short of this goal.
Let's help them to not have to take out another loan on top of the $8,600 that they are already in debt.
After this post I am going to stop bugging you guys, and Hridaya is going to look for creative solutions to support this family. So now is your chance to donate to this wonderful, hardworking family that just wants to provide a good life to their children.
Thank you all so much!
Sunny
27 APRIL
Hello everyone!
Thank you for taking the time to read about this beautiful family that live in a reality greatly different than we probably are.
I went to visit Celia, Johan, Elena and their whole family on Sunday April 21st, and here I will share some of their updates.
To say it simply, they have A LOT of need. Yet somehow despite lots and lots of stress, they were calm and optimistic, trusting that they are going to make it through this hard time.
In June they have to pay their last huge insurance bill: $1850. They just paid $650 in February. They have no idea how they are going to get this money together.
The good news here is that this year will be their last year paying this much. From 2020 they will only pay one payment of $850 each June. The NGO that gifted Johan his cochlear implant 5 years ago is a company that does the surgery for free with the agreement that the family will pay the heightened insurance rate for 5 years. They have almost made it through this period!
They still have no doubts about Johan having the implant. He is hearing and speaking better and better all the time! They are hopeful that as he continues to grow and receives more and more care from specialists, he will be able to function quite highly and independently. They are also extremely grateful to have this insurance because every few months an important part of Johan’s implant breaks. Because of the insurance they only have to pay for shipping, a huge relief!
On top of the June payment, they still owe Santander bank about $7350, and have to pay 2350 pesos (about $120) each month. And they also owe Hridaya about $1,250 and they are needing to start chipping away at this each month.
So, they have really big numbers hanging over their heads! Plus their weekly expenses to survive and Dayana’s medications and Johan’s therapies.
I talked with them for awhile to figure out their financial strategy and there really is no way they can make everything happen without our help or having to take out more loans.
Their current weekly income is about $140, so about $560 a month, which is not nearly enough for them to make payments, survive, and save for the $1850 owed in June. They have less than two months to get together that huge amount and are not sure how to make it happen. Let’s help them!
..........................
To give some perspective: if it wasn’t for their huge debts and money owed, they would be living a quite good life. Efrain has a new job delivering gallons of bottled water and and is now making $20 a day, 5 days a week (a really good salary for this area). The job also allows him to be home in the evenings and there is not the need for him to go to work in Oaxaca. Great news! He trying to become a taxista again by night to make a little bit more but he has not found a company that is hiring. Elena still sells late-night food and makes about 800 ($40) extra a week.
Dayana is getting sick a lot and is quite a mischievous almost-2-year-old. This made Elena decide to stop working during the day to be able to be home with Dayana and to spend more time tutoring Johan. When other family members were caring for Dayana she kept getting injuries or sick and Elena realized that all of her paychecks were going to doctor’s visits and it made more sense for her to just stay home until Dayana is a little older.
Elena still brings Johan to Huatulco for therapy every Wednesday (500, $25, a week) and they are thinking of eventually relocating the family there so that he can receive more consistent therapy and allow him to be part of a deaf community, plus they could each find better paying jobs in a bigger city. In Huatulco there is a deaf public school where the teachers teach in sign and are trained in working with this! Once they are able to make it through this period of having such high expenses and feel ready to leave their small family village, this seems to be a great option. Maybe sometime next year they can make it happen!
And maybe we can help! The family said to me many times that what we have been able give them for support has been enormously helpful, they don’t know what they would have done without it. To us it may seem like little amounts but for them it is so much. When we’ve gotten a group of donations together we have been able to provide almost a month of their wages, several times. Why not keep offering relief to this beautiful family?
JANUARY 30
Hello everyone!
I’ve just had a nice long catch up with Elena and have some good news to share!
She has a really good job and this has relieved them a lot! Since the middle of December she has been working as a waitress at one of the area’s nicest restaurants, El Copal! It is actually a restaurant that I brought my grandparents to when they came to visit! There she is making at least 400 pesos ($20) a day and often makes more because of tips! Plus, her schedule (3-10/12PM) is super harmonious with her life with the kids. Basically she is with them every morning and then comes to work in the afternoon after Efrain is home!
Efrain, her husband is back from Oaxaca City. His work was great there, but as the architect began finishing his projects, there wasn’t much for him to do so he decided to come back to be with family. He is now back to driving a taxi, making about 200 pesos a day. The plan is for him to adopt a life of spending one month at home and then two months in Oaxaca City. As a taxista there he makes 500 pesos a day, much better than here, but his family also needs him around, so they don’t want him to move there permanently!
Because of their steady jobs, they have much less financial stress and are feeling better than before. But, in February and July they know they have big insurance bills to pay and are hoping to not have to take out another big loan as they still have their past huge ones they are paying off.
Johan is doing well. At his new therapy center in Huatulco they say he is advancing so much and at home they can see this as well. Because of the sign language, he is able to be more expressive and this has made him much calmer and happier. They are even starting to share sign language with his friends so that he can have more people his age to connect with! Dayana, his little sister, is a natural! They also say that his reception level to sounds is much higher, he is hearing and speaking better and more clearly and he is able to pay better attention because he is less frustrated! This is great news!
His implant has been doing well with no issues since December, our donations were able to provide for all of the parts, yay!
Dayana, their young daughter has continued to contract many illnesses. The doctors have confirmed she has a very weak immune system and has recommended a type of supplement, this supplement is a little pricey though. While they are making more money now, they still have their normal cost of living along with Johan’s therapies and the hope to be making regular payments on their debts…affording this supplement causes them some stress. If anyone felt inclined to support them with this…they need about $80 a month for her supplements!
Other News:
They learned from their Mexico City audiologist that the FM System that they were advised to buy last time is now included in Cochlear’s most recent implant version (the Nucleus 7). So they have the plan to wait 2-3 years to purchase this new model once it becomes cheaper, and not worry about buying the FM System now. They would love to have it now because it would improve his ability to hear and thus excel in school, but they know they need to prioritize their expenses!
Another piece of good news! June 2019 will be the last payment of $1850, after that it will go down to one annual insurance payment of $850, which is amazing! Way less than the annual $2,475 they have been paying! Because of the way he received the implant (it was a free installation from a charity organization), it meant they needed to pay more for insurance for the first 3 years. But soon this period is over and they will be able to pay the normal rate. Yay!
The family also wants to share that they would love to purchase a printer. They currently spend a lot of money on printing Johan’s worksheets and homework plus the transportation to the city where there is an internet shop with a printer, these costs could be much diminished if they had a printer at home! I found one on Mercado Libre for 500 pesos ($25!).
The Families $ Needs for the next couple months:
-February insurance: $625
-July insurance: $1,850
-Dayana’s supplements: $90 a month
-A printer: $25
Anything helps, thank you all so much for reading and caring!! The family is very thankful to have this platform to communicate with the world!
Hello everyone!
Thank you all so much for your contributions of care and also of $. I’ve just spent a while with Elena, Celia’s daughter and Johan’s mother, and I’d like to share their family’s updates!
First of all, she shares that she is so happy for this opportunity to feel a connection with so many diverse people. She says that this is one of the sweetest blessings of Johan’s situations-that because of this, she is connecting with people she never would have met before and going far out of her comfort zone and learning so much! May we all keep sending her and their family lots of love
Today Elena is feeling a mix of emotions. She is optimistic and sweet as can be like always, but she is missing her husband. Efrain moved to Oaxaca City a few weeks ago because he was given a good job by a friend who is an architect. He is making 500 ($25) pesos a day, which is much better than what he was making as a taxista, and he enjoys the work much more. He is basically the architect’s personal assistant, supporting him in many ways. Having a good income brings a sense of relief to the family, but it’s hard for them to be apart. They are a very happy couple and Efrain is a great dad, very involved and caring, much more so than many dads that I’ve seen here! Elena misses him and is tired from balancing their two kids, Johan’s school and therapy needs and also trying to work at nights at their taco stand. But she is still smiling! I know his kids, Johan and Dayana, are also really missing him.
With the recent donations, Efrain’s new income and taking out some more loans (25,000 pesos/$1,350), they have been able to cover their biggest costs for the next six months! Besides their rain cloud of debt, the family's biggest financial woe is the insurance for Johan's cochlear implant’s processor, $1850 a year which they divide in order to pay $925 every November and every June. They’ve taken care of the November payment and now don’t have to worry about it this again until June 23, 2019. But let’s be proactive and help this be a stress-free payment when the time comes! In February they will also need to pay for the annual insurance ($650) for the implants’ accessories (the antenna and cables). Let’s also be active in working towards this!
With the donations they have received they have been able to cover his tri-annual check up in Mexico City, which was about $250. Having had to miss some of these appointments in the past, they are super grateful for our contributions! His check up went really well, he is healthy and is advancing very nicely in listening and speech-they noted great improvement since he has been going to weekly therapies! They also offered encouragement and guidance in moving forward.
They are also fully covered with almost (will mention the need at the end) all of the necessary parts (dehumidifiers, filters, batteries) he needs, and they have been able to afford going to therapy each Wednesday-which is still going beautifully!
They were even able to afford a good electronic toothbrush (280 pesos, $14), which is helping him recognize and massage more places in his mouth, which helps his speech! They also have been practicing facial massages for him with the same mission—and while he doesn’t like it very much, it seems to be helping!
On Wednesdays Elena takes Johan and Dayana (because she is still breastfeeding) to Huatulco, a big city 30 minutes away for therapy. They found a really amazing center that offers many kinds of therapy at a very affordable rate (they do an economic assessment of the families, which has meant that they only pay 30 pesos ($1.50) an hour). Johan has a two hour session with a speech therapist, then an hour with an auditory specialist and then two hours of sign language.
Elena says that because of having a great social experience there (he used to cry when they went to the other center in Oaxaca City and now he is enjoying his teachers and the other kids) and because of being able to be more expressive and understand more with sign language, he seems to be happier than ever. She also laughs because Dayana is already able to sign her name, and she isn’t even 16 months old yet!
So the family is doing well…Johan is happy and advancing, Dayana is growing, Elena is persevering and Efrain is working hard. They are going to be okay, but they still need our help!
Their current financial needs:
-In order for him to have equilibrium, there is an auxiliary piece that goes in the ear opposite his implant. This is currently broken, and he has been feeling a little nauseous and off-balance. They need 2300 pesos ($120) to fix it
-They are now $7,350+ in debt
-Next February’s insurance of $650
-The cost of the weekly Huatulco therapy trips, $20 a week
-The family would also love to have a cheap computer. The therapists have many cool electronic exercises for improving concentration, sound identification and active listening; which would benefit him a lot. The kinds of activities she puts together for him (going to another city to use computer, print then laminate) are not that cheap, plus there are things he could be doing for his normal school. And the whole family would benefit from having this resource!
Anything helps!!!
PS. My grandparents came down to visit me in Mazunte recently and were able to meet the family…know that if you are ever down this way, you could too! It was a really beautiful time for all involved
Johan at his sign language class!
Johan at his appointment in Mexico City!
Johan and Dayana!UPDATED SEPTEMBER 29:
With their first round of donations, the family has been able to repair the taxi ($150-photos included), cover an unexpected maintenance to the charger and port of the rechargeable battery needed for his hearing aid ($350), go to meet a new therapist at an auditory therapy center in Huatulco (only 30 minutes away, much better than going all the way to Oaxaca City!), and afford their cost of living for the weeks!
Now with the taxi working the family is back to making what they are used to making (he makes 250-350 pesos a day-the equivalent of $12-18 USD & their nightly taco stand bring in 100-300 pesos, or $5-15 USD), they are super happy about this. Between this and receiving these amazing donations, they feel much better. But even with their incredible optimism and sweetness, I can tell they still stress over money...even though they try to hide it.
What happened with the charging ports of his battery is quite sad, but not surprising. We've probably all heard the theory that after a certain amount of time, our devices (like laptops, phones and other electronics) tend to start showing issues-a way to keep us buying the newer versions. The only evidence I have of this is seeing many cases like this-and now it seems it happens with cochlear implant parts as well!
The device began malfunctioning randomly last week and then completely stopped working-meaning Johan will be without his device until the new parts come in the mail. Hopefully they will be here soon!
It is crazy to me how much the repairs and parts for this device are, even though the family receives huge discounts because of their insurance! It would be pricey for a family in the states-but it is incredibly steep for a family living on the wage they make down here. On Cochlear's website they do not list their costs, but by calling you can inquire.
Maybe some of you are wondering, "Why does this family that cannot hardly afford it, have this device?" I also asked this-and then happened to meet a wonderful audiologist from Berkeley hospital who speaks Spanish, and together we went to assess the situation in more depth. Prior to going to visit them in their home, I had thought to recommend to the family to consider removing the device and focusing on sign language-that way he could still have a communicative future with less cost.
However, after a several hour long visit, many points came up that help to clarify why the family decided to implant him in the first place. The chose to do it when he was 3, hoping that he would still be young enough to have not missed the critical language acquisition phase of brain development. Based on the audiologist's assessments, Johan is definitely hearing, able to differentiate sounds and also recreate sounds, making simple words to express himself. If he is able to meet with a therapist on a continuous basis (which now have found and loved a new therapy center much closer, they will be taking him for therapies much more frequently-several times a week!), he will soon be making sentences and by the time he is an adult, he will be independent and high functioning.
As many families in Mexico, the family is very close-knit. The families of both the husband and wife are both on the same short dirt street where Johan's home is (including all uncles and aunts and cousins and sets of great grandparents!). The family moved once before to Oaxaca City so that Johan could be closer to the therapy center they went to previously. Moving was extremely hard for the family, not just financially, but because they felt so alone and out of place. They missed their support system and after trying to make it work for a very hard year, they decided to move back to their small village of Cuatode.
In Cuatode, a village of less than 200 people there are no other deaf children and there is no one who speaks sign language. The biggest city close by, Pochutla, has many more people but a very small deaf population (AKA only one old man, that they are aware of). I mention this because I do feel it is in the family and Johan's interest to stay close to home, because this is where they want to be. Having romantically imagined them moving to a bigger city and Johan attending a school for the deaf prior, I no longer feel that this would be as romantic as I made it out to be in my head. While they would be open to something like this because they would do anything for him, I feel a much more supportive future for him and the family would mean staying close to home.
In this case, in order for him to live in Cuatode as an independent man one day, having a job and expressing himself with friends and potential partner and children, it does feel quite essential that he be able to hear and speak. Because of this the family has done all that they possibly can, now having accumulated monster debts and being able to barely see the light through their financial rain clouds, so that Johan can have a future that they feel would be okay. I admire them so much for this.
So yes...it's a crazy amount of money we are trying to raise for this family. But it's money that has a great purpose and makes sense to be spent. I feel they deserve it, having now spent quite a bit of time with them in their homes eating mole and postres (the father even taught me how to climb up and machete down coconuts!), I have gotten a sense of the mega amounts of love and power that runs in their blood. The great grandparents are warriors, so humble and strong, the grandparents as well (our chef Celia being one of them)-embodying self-sacrificing hard work for the love and empowerment of their family, and all of the siblings are gracious, sweet and proud of their family. The kids in the youngest generation have been raised to dream and supported to do something pretty crazy around here-pursue higher education! Johan's parents' siblings have children that are now attending university (one to be a vet, one for hotel administration, one for English!), and the younger ones I'm sure will have a similar track. The parents working so hard to afford this endeavor, giving them everything they possibly can.
Simply put, I am in awe of this family (and their mole...a special Mexican sauce full of delicious spices!). And I hope that by sharing a little bit more about them, you can also feel more connected with them and where anything you donate goes!
To recap on their needs:
· Repayment of bank loans (interest increases every month)
o $6000 USD
· FM System—an addition to Johan’s hearing aid that would enable him to differentiate sounds. His therapist highly recommends it as he is struggling to advance in speech coherence and speaking. School is really hard for him right now, he’s not advancing, and they don’t have money to afford a private school with teachers that could spend more time with him. The audiologist confirmed that this device would be a great investment
o $1000 USD
· Insurance for the cochlear implant processor
o $1850 USD, every June
· Insurance for the accessories of the cochlear implant (antenna and cables)
o $650 USD, every February
· Rechargeable battery for the implant
o $350 USD (price much less because has insurance), every six months [this has been covered for now!]
· Filters for the implant
o $55 USD (price much less because has insurance), every six months
· Dehumidifiers for the implant
o $20 USD (price much less because has insurance), every two months
· Audio Therapy
o $75 USD a week, includes transportation and 3 appointments
· Go to Mexico City hospital for checkup/mapping/programming
o $250 USD for cost of transport, hospital and hotel, 3 times a year
Just like last time, feel free to specify which aspect you'd like to donate to! It'd be amazing to set them up with the security of knowing they'll be able to afford his therapy, and also start making some advances on the FM system?! All aspects are important.
Sooooooooo much gratitude from myself, Elena (the mother), Abraham (the father), Johan and his little sister Dayana...and the whole Gaspar/Hernandez family!
The repaired taxi and the father!
Their home!
The family! In order from left-the great grandmother, me (awkward...ignore), Celia, Dayana, Elena, Abraham, Johan, and our audiologist friend, Ben!
ORIGINAL POST, from September 7, 2018:
Hello everyone!
In our Hridaya community, we have an amazing Mexican chef who has been with us the beginning. Her name is Celia and behind her delicious bread and recipes is her beautiful, hopeful, independent, kind and generous soul.
Celia has a grandson, Johan, also incredibly sweet and calm, who was born deaf. His parents and extended family have struggled to support this need and have now found themselves in a situation of extreme debt and financial desperation.
Currently the family relies on Celia's income and loans from Hridaya and banks. The husband is a taxi driver but because of a recent wreck, he hasn't been able to afford to repair the car to keep driving. They have a taco stand which generates some income, but no where near enough to cover their expenses.
What are their needs?
· Repairing the taxi, the whole front is damaged, and the windshield is broken
o $215 USD
· Repayment of bank loans (interest increases every month)
o $6000 USD
· FM System—an addition to Johan’s hearing aid that would enable him to differentiate sounds. His therapist highly recommends it as he is struggling to advance in speech coherence and speaking. School is really hard for him right now, he’s not advancing, and they don’t have money to afford a private school with teachers that could spend more time with him
o $1000 USD
· Money for food; diapers, formulas and medicines for younger daughter (has very weak immune system and gets sick very frequently); general living costs
o $50 USD
o Every week
· Insurance for the cochlear implant processor
o $1850 USD
o Every July
· Insurance for the accessories of the cochlear implant (antenna and cables)
o $650 USD
o Every February
· Rechargeable battery
o $350 USD (price much less because has insurance)
o Every six months
· Filters
o $55 USD (price much less because has insurance)
o Every six months
· Dehumidifiers
o $20 USD (price much less because has insurance)
o Every two months
· Therapy (goes to Oaxaca City to meet with a specialist)
o $75 USD for cost of appointment and transportation
o Every two weeks
· Go to Mexico City hospital for checkup/mapping/programming
o $250 USD for cost of transport, hospital and hotel
o Three times a year
If you are interested in donating to a specific element of these needs, feel free to specify where you would like the money to go!
Working on gathering the evidence for all of the costs-will be included here soon!
