Friday, July 18, 2014

Plea for help for Jessi Getchell

UPDATE: 7-28-14

Jessi has been moved to the nursing home. She shares a room with 3 other girls so it's a little crazy there. Not at all what she is used to and she is not adjusting very well.  She cries when her parents have to leave here where she never did that when she was in the hospital.  Also, when Jessi's parents arrived at the nursing home yesterday Jessi was having difficulty breathing and was retracting (sides pulling in underneath the ribs) as she gasped for air because she needed to be suctioned.  Jessi wasn't even dressed but it's appalling that she was struggling to breathe and nobody was helping her until her parents got there and suctioned out her trach.  

It's awful that she has to be there instead of going home where she can be comfortable and cared for by her loving parents.  It's crucial that Jessi receive the following to make it happen.

What Jessi needs is a wheelchair accessible van that is reliable and can transport Jessi back and forth from Athens to Hershey for follow-up appointments with her doctors. They will not be allowed to take her home until that happens.  If you know of anyone who would be willing to donate a wheelchair van, 
PLEASE call Jen Baker at (717) 884-6081 

2- Jessi's parents need to gain guardianship over Jessi.  If this doesn't happen within a certain amount of time, the nursing home could potentially gain that legal guardianship and the parents would lose any claim to their daughter.  They need help paying for the court costs since it looks like they may have a lawyer to help them.  

PLEASE don't let this happen to this family who have already gone through so much!  Please share their story and contact the media!  I know that if the news takes on this story the public will open their hearts and help Jen & Jeff take Jessi home! 

Here are the phone numbers to the news stations in Hershey PA. EVERYONE PLEASE bombard them with phone calls! 

NBC news affiliate in Hershey: WGAL = News Tip Line: 800-TIP-WGAL (800-847-9425)
http://www.wgal.com/tv/contact 

CBS news affiliate in Hershey: WHP = Phone Number 717-238-210
http://www.local21news.com/

ABC news affiliate in Hershey: WHTM
http://www.abc27.com/
News Department
Main: (717) 236-1444
News Fax: (717) 236-1263
News Tips: 1-800-FON-WHTM

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UPDATE!  7-21-14

We have a donor of a ramp for Jessi!  Now all we need is a wheelchair van!   RIDING 4 THE CAUSE is building Jessi the ramp! Please share this story and get the word out!  Here are some phone numbers to the local media in the Athens are:

Local newspapers Morning Times 570-888-9643 
Daily Review 570-265-2151 
Wetm news station 607-733-5518 
Weny news station 607-739-3636


RIDING 4 THE CAUSE will start building the ramp soon.  We'll keep you updated as to when this happens!
When calling the media about this story, please mention that RIDING 4 THE CAUSE is building Jessi a ramp from the goodness of their hearts but that Jessi still needs a wheelchair accessible van in order to be able to go home.  Jess will get transferred to a nursing home in 2 days (July 23rd) and her parents won't be close enough to visit her every day!  This is the most ridiculously awful thing that could happen!  I do not understand how the state can place this "little girl" in a group home when she has a loving family to go home to.  The whole story is below so feel free to share this with everyone you can think of!  There is a GoFundMe fundraiser set up found here:  



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Jessi's story:

My dear friend Jen Baker's daughter, Jessi Getchell, was born with CHD (congenital heart defects), Down Syndrome and many other difficulties. On top of all these issues and surgeries, Jessi has been battling leukemia since 2011. She recently had to stop chemo because it has severely damaged her already compromised heart.

In 2013 Jessi began to have symptoms of what was thought to be a stroke but when those tests came back negative, she was sent home. 6 months later Jessi was rushed to the hospital where she ended up in a coma and thought to be dying. Funeral arrangements were made as Jessi was quickly slipping away. The funds for the funeral were raised and put into a CD which is managed by the funeral home and are ONLY for a funeral for whenever Jessi needs it. Those funds cannot be used for anything else.
Finally a diagnosis of Guillain-Barre syndrome was made in May of 2014 and proved to be the answer when treatments for it started to bring Jessi back out of her comatose state.
Jessi was discharged from the hospital in Hershey PA and sent to a rehab center on June 19th where she continues to make improvements. However, the rehab facility was insisting on discharging Jessi to send her home to Athens, PA which is over 3 hour's drive from Hershey. Here's where it gets tricky. Jessi now has a trach and is still unable to support her head on her own therefore it is not safe for her to ride in her car seat. The rehab center was going to send Jessi home via ambulance but the problem came up of how to get Jessi back to Hershey for follow-up appointments. Now the rehab center is insisting that either Jen Baker provides a wheelchair accessible van and a ramp to their apartment in Athens (which they don't have and can't afford) or Jessi will be sent to a nursing home in Lancaster PA which is even further away from their home in Athens. Jessi has insurance that will pay for vantran transportation but not for the distance between Athens and Hershey. Jessi’s wheelchair provides the support she needs where a car seat can’t, that’s why she needs the wheelchair accessible van. She also needs a ramp so she can be transported from the van into the apartment. Jessi is at the level of a very young child and is non-verbal so even though she 20 years old, she is unable to make her own medical decisions. Her parents are both disabled and don't have the money for a lawyer to get legal guardianship nor do they have the money to move to Lancaster to be near their daughter (or have their daughter live with them there). It has been over 100 days since Jessi was rushed via ambulance to Hershey. They have come so far! They need help financially ASAP because Jessi is being moved to the nursing home THIS MONDAY, July 21st. Jessi’s parents have to leave the Ronald McDonald House by Wednesday, July 23rd.
Due to being severely developmentally delayed all her life, Jessi has always needed a special wheelchair. In the past her parents were able to use a fold-up one which they could put into any car or van and Jessi has a special car seat that she used to be able to sit in. It will probably be quite some time until Jessi is able to travel sitting in a car seat if she even regains that much strength. Having a wheelchair accessible van is crucial for her to get to the appointments that she needs to go to.
The insurance company will provide in-home nursing, the wheelchair, ventilator, suction machine and all other medical supplies that Jessi needs but they won’t provide transportation for that distance nor do they provide vehicles or ramps.
What Jessi needs is a wheelchair accessible van that is reliable and can transport Jessi back and forth from Athens to Hershey for follow-up appointments  
and  
her parents need to have an attorney provided for them who will help them get guardianship over Jessi so they can make all the legal decisions for her so this doesn’t happen again.
It’s appalling to me that the state of Pennsylvania would rather pay for Jessi to be in a nursing home and pay for her care 24/7 than to pay for a handivan to transport Jessi to and from doctors’ appointments every few months. Even if they paid for a wheelchair accessible van and a ramp, they would still save money over the long run. They are ripping a “little girl” away from her family over this nonsense. Jen has been through so much caring for her daughter over the past 20 years and the past few months have been especially hard. Studies show that children go downhill if they aren’t allowed to be with family. Jen will be living 3 hours away and doesn’t have the means to travel back and forth nor will she have a place to stay in Lancaster. Any help would be greatly appreciated.

This is the Medical History that the hospital gave the parents to give to the rehab center.
* Trisomy 21 with severe developmental delay (Down Syndrome)
* Congenital heart disease (ASD, cleft mitral valve, mitral valve stenosis, mitral valve insufficiency, moderate pulmonary valve hypertension and right ventricular dialation
* Acute lymphoblastic leukemia (July 2011)
* Axonal variant Guillain-Barre Syndrome (2014)
         *Completed 10 sessions of apheresis
* Deep vein thrombosis (2014)
         * Occlusive deep venous thrombosis of the right common femoral, proximal deep femoral and proximal superficial femoral veins, mid and distal inferior vena cava, the bilateral common iliac and right external iliac veins
* Respiratory failure requiring long-term ventilation (2014)
* Hemorrhagic stroke causing ischemia of the left basal ganglia and left hemiparesis (2005)
* Seizure disorder
* Shunted hydrocephalus
* Gastro-esophageal reflux
* Autism
* Nystagmus
* Left hip dislocation
* Avascular necrosis of left shoulder
* Chronic sinus infections
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Jessi 4-20-14:  Jessi on the vent before her surgery for the trach.  Jessi was finally opening her eyes after being in a coma. 

 

Jessi with her Daddy (Jeff) 6-10-14  She’s finally able to sit up in her wheelchair.


Jessi is able to lift her arms up that high.  Therapy is working!


Jessi playing with a ball during therapy.  She is unable to sit up all by herself yet but she is really making great progress!



Jessi going for a walk with her Daddy.  6-29-14


Jessi sure loves her Daddy!  She loves her Mommy too but she is the one taking the pictures.  :)


Jessi painting during therapy.  She doesn’t have to be on the vent 24/7 now!  She is still getting stronger!


Due to being severely developmentally delayed all her life, Jessi has always needed a special wheelchair.  In the past her parents were able to use a fold-up one which they could put into any car or van and Jessi has a special car seat that she used to be able to sit in.  It will probably be quite some time until Jessi is able to travel sitting in a car seat if she even regains that much strength.   Having a wheelchair accessible van is crucial for her to get to the appointments that she needs to go to. 

Please keep this beautiful “little girl” with her parents. There is a GoFundMe account set up at GoFundMe- Wheelchair Van & Ramp for Jessi 
You may also send direct donations to fancydancycrafts@cox.net to save on fees.
I can be reached at fancydancy@cox.net - please email me if you would like more information.  If you would like me to call you please provide your phone number and I will be happy to call. 

Jen Baker can be reached at justmejen39@gmail.com

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