A Van for Baby Kakes

For: Elaine Parsons
Organizer: Shannon Grant & Family Friends
A Van for Baby Kakes (Elaine Parsons)
$5,579
of $9,000 goal.
Raised by 71 donors
61% Complete
This fundraiser is closed. Thank you for your support!

The Story

A Van For Baby Kakes!

PLEASE ALSO SEE THE "UPDATES" TAB (above) FOR THE MOST UP TO DATE INFO ABOUT BABY KAKES & FAMILY!

Our Family in a nutshell:
Mom is 38 and Dad is 34. We have been together since 1999 and were married in 2001. We live in Southern California where we both grew up and we even went to the same high school! WE HAVE 4 AWESOME BOYS who are our life! In 2003 we had our 1st son, who is almost 10, in 2009 our 3 year old was born, and then we were blessed with a surprise of twin boys in December of 2011! One of the twins, whom who we lovingly call “Baby Kakes”, was born with life altering complications that we now know as HYPOTONIC CEREBRAL PALSY (A RARE FORM OF CP THAT IS LESS THAN 10% OF ALL CP CASES) plus many other physical, internal, digestive, and respiratory problems that affect his ability to thrive. Many of Baby Kakes’ struggles are also from what your brain normally controls automatically and these are often his larger struggles in daily life. Much of this is due to him being born with reduced white matter in the brain & this is a permenant condition. He can be ok & then 5 minutes later be in terrible distress.  Mom went through a huge medical hospitalization after the twins were born that almost cost us her life but she has fought through and is now fighting for the kids every day. We are doing our best with our new life and we try to keep our spirits up! Dad works very hard and supports our entire family. We live in a small manufactured home on his single income due to the needs of our family with multiple disabilities and are in debt due to high medical needs for our entire family after numerous hospital trips & stays plus an ongoing need for PT, OT & speech therapy. Mom is constantly on the road with the kid’s to doctors, hospitals, & therapies or fighting through medical red tape to take care of their needs.

WE NEED YOUR HELP!
We are in desperate need of a large wheelchair lift van so that we can better function for his needs and, eventually, go places together AS A FAMILY again! We really miss those little things more than you can imagine! We currently have an older SUV but it doesn’t meet our size needs now that we always have to take a large wheelchair (that requires us removing a row of seats to make room for it), PLUS 4 children (3 kids in large car seats), plus 2 parents & a nurse who must also ride in the back right next to Baby Kakes to be able to care for him while traveling, a stroller, a large amount of medical equipment that must travel with him at all times, as well as any other essentials needed while away from home with our kids. We really need a van that can easily seat the 4 kids plus the nurse in the back with an empty space or seat open next to our 3 yr old, who has Autism, since he's a very active little guy. So we need at least 8 full sized seats, a large cargo area for wheelchair & stroller plus a wheelchair lift.  The wheelchair is incredibly heavy and difficult to lift with Mom’s back injury.

These vans that fit our needs are typically over $35,000 & the lifts can be terribly expensive too so our hope is to raise enough money to buy one used or at auction!  We've done our research and have found many available in our price range and that's why we're asking for your help.  We are thinking outside the box to solve our problems fast!  If we are lucky enough to get a van paid off & outfitted for our needs, we plan on donating our SUV to a local charity that gets handicapped families into vehicles so that another (smaller) family can gain their independence & freedom, too!  We'd just like to pay-it-forward if possible.

PLEASE PRAY FOR US - Our NEW goal is to have a van for Baby Kakes by the end of December! The aution vehicles that suit our needs have dried up right now as we approach year end but we hope & pray as we get closer to the NEW year an oppertunity will be within our reach shortly! We will keep you updated on our progress & tell you even more about the family through updates shortly!

It Takes A STRONG Village +

Baby Kakes’ Mom (Mama T) & family friends started an online facebook page for supporting other special needs families going through similar journeys. Please check it out or pass it along to those you know!
https://www.facebook.com/ItTakesAStrongVillagePlus?ref=tn_tnmn

May God bless you and your family.  Thank you for reading and sharing our journey,

Mom & Dad

Fundraiser Updates

Posted on October 5, 2013

Posted on October 5, 2013


Just doing OUR BEST & accepting a new reality!


We got Baby Kakes' muscle biopsy surgery (lab test) results back recently after a long 6 week wait since the surgery that took place on August 22nd. Now we are dealing with some really hard news to swallow right now about Baby Kakes with a new diagnosis & could use your prayers immensely. It will take another 6 weeks for them to run a 2nd set of more in depth testing on his muscle tissue from his biopsy to get final news on specific type (they have a frozen sample saved to send to a special lab). Either way this isn't "good news" & it's another new hurdle for us but we're praying that this will come out "ok". We are in a holding & praying pattern for about 6 weeks now while we wait. Just pray pray pray for Baby Kakes please! He is being rushed into some new specialists as soon as possible. In the mean time Mom has her hands full with 4 IEP & IFSP meetings plus a "full dance card" of medical appointments for the whole family & our whole family is under additional emotional stress.

PLEASE PRAY FOR US - Our NEW GOAL is to have a van for Baby Kakes by the end of December! The auction vehicles that suit our family’s size & needs have dried up right now in the market while prices have increased as we approach year end but we hope & pray as we get closer to the New Year an opportunity will be within our reach shortly! We are also in the process of getting a better equipped generator for our frequent power outages to take better care of Baby Kakes & that's taking some time right now! We really need to get this checked off our list soon as we recently had to evacuate the whole family with a 19 hour power outage as Baby Kakes faces medical complications within the first couple hours from his complex needs. We will find a way!

We will keep you updated on our progress & tell you even more about the family through updates shortly! Even though our spirits may be low right now we WILL find it inside us to regain our strength to carry on & FIGHT just like we have been doing!

Thanks for EVERYONE'S support!

Love & thanks,
Mom & Dad


Posted on August 19, 2013

Posted on August 19, 2013

So so soooooooooo close! We can hardly believe it! Thanks for sharing & getting us so far! We are humbled & very grateful!

1st day of school for Dancer (entering 5th grade) & Houdini (begining his 2nd year in the autism BEACON pre-school program) is Tuesday & then Baby Kakes' surgery is THIS Thursday 8/22! Please send some extra prayers our way for this day as it's always hard to see your baby go under anesthisia even when it's necessary.

It's sure to be a big big BIG week in this house! Lots to plan & do to prep! Praying & crossing our fingers we can meet the van goal this week & celebrate!

Baby Kakes had a hard couple weeks lately with a horrible choking spell where we were so scared that we were afraid we might lose him & then shortly after an emergency procedure when his g-tube popped allowing his stoma to close down enough that it required surgical dilation to get him back on his tube feedings. He then got ANOTHER infection this time in his stoma site so he's finishing up his 73rd day of antibiotics in the last 3 months. He is such a fighter & even while coming down with a cold on top of this he keeps pushing forward! He amazes us every single day!

Thanks for EVERYONE'S support!

Love & thanks,
Mom & Dad


Posted on July 23, 2013

Posted on July 23, 2013

Baby Kakes' primamary diagnosis is Hypotonic Cerebral Palsy (a rare form of CP) which accounts for less than 10% of all CP cases. He also has many other physical, internal, digestive, and respiratory problems that affect his ability to thrive. Many of Baby Kakes’ struggles are also from what your brain normally controls automatically and these are often his larger struggles in daily life. Much of this is due to him being born with reduced white matter in his brain (likely a congenital malformation) & this is a permenant condition. He is FIGHTING through this & so are we!

Hypotonic Cerebral Palsy is not well understood by most people so we thought we would share some links for you to look into if you would like!

We hope this reading allows you to understand our journey a little better & why we are heavily preparing for the road to a better life for him by taking action fast! Therapy, doctors visits, intervention & tests can't wait! We are wanting him to have the best life possible & intend to do everything in our power to make it happen!

Thank you for your prayers, sharing our story, well wishes, & contributions! You are making this road we're traveling a little less bumpy. Please pray for us to have our dreams for him to come true!

Thanks,
Mom & Dad

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