Friday, July 29, 2011

My special little friend

Last year around this time a very special little boy (and his awesome family!) came into my life.

His name is Juan Pablo and he is 2 years old.

Last June one of our Monterrey friends, Sylvia, had gone to a funeral for one of her neighbors. She was so moved by the sermon that the priest had given that she felt compelled to go up to him after the service and talk with him. She told him she was on her way to visit a friend who had been sick in the hospital for a long time (me). The priest asked her if she would like a ride, because he just so happened to be on his way there too.

She accepted his offer and when they arrived at Hospital San Jose, the priest, Father Carlos, decided to come up to the 8th floor with her to meet mom and I and to pray with us.

It is a visit I will never, ever forget.

I was feeling very discouraged that day. My discharge plan from the hospital had fallen through… again… because I was sick with yet another infection. I was feeling miserable. Father Carlos spent time listening to me and than prayed for me. He told me that God knew what He was doing, even if I don’t ‘get it’ right now. This delay in leaving the hospital was for a purpose… he assured me, His answer is the right answer and His timing would be the right timing.

I definitely needed to hear that message and I know God used him to speak it to me that day, but it is what he told me next that will make me remember the visit forever.

He said that the reason he was visiting the hospital was to see a little boy who was in the pediatric ICU on the 4th floor.

He then shared with me the story of this brave little boy, who had spent most of his nearly 2 years of life, fighting for it, in the hospital.

This is Juan Pablo. He's 2 and he's adorable!

Juan Pablo was born with Metatropic Dysplasia, which is really rare form of dwarfism. It’s so rare, in fact, that he is the only known case of it in all of Mexico!

He is the youngest child of his amazing parents Roger and Marus. They have 3 other children- Paulina, Roger Jr. and Marianna. Metatropic dysplasia is a genetic condition, however, no one else in his family has it.

This type of dwarfism causes major problems in the musculoskeletal system such as limb deformities, joint contractures and scoliosis. Juan Pablo’s spinal curvature is so extreme that it has compromised his respiratory and digestive systems, leaving him dependent on a ventilator to breathe and on a feeding tube to eat.

The top specialist for this disorder is Dr. Mackenzie at DuPont Hospital in Delaware, where he has traveled to for spinal surgery and follow-up care. He will probably need to have numerous surgeries there in his lifetime.

Ironic how Juan Pi has to travel to the US for his treatment, and I have to travel from the US here.

He is in many ways my kindred spirit… We both have spent a lot of time in hospitals far away from the comforts of home.

I had a huge stuffed animal bear in my hospital room, a gift from my dad, that I called “Monty” (short for Monterrey!) I told Father Carlos that I wanted Monty to go down in Juan Pablo’s room. I know how lonely, long and scary each night in the hospital is and I knew Juan Pablo needed him more than I did. After all I was 22... he was only 2!

Juan Pablo's amazing family with Monty

The next day Juan Pablo’s family came up to my room to get the bear. Hearing what their little son has gone through in his short life… wow. Talk about a wake up call! They are such an incredibly strong family.

From that point on whenever I was having a rough time I just thought of Juan Pablo and I got the strength to get through it, whatever it was.

Juan Pablo's family's nick name for him is "Juan Pi"-- they also call him "Cham Pi"-- short for Champion. And that he certainly is!

Juan Pi has been back in Hospital San Jose for nearly 1 month now and is still unable to be transferred back onto his regular home ventilator without being unable to get enough oxygen and having episodes of tachycardia. His liver is enlarged. His lungs are full of secretions. He is sick.

I know those words that Father Carlos spoke over me are true-… There was a purpose in that delay for me—and I know part of that was so I could come to know Juan Pablo and his family. I consider them a part of my own and I love them so much.

God has a plan for Juan Pi, I am sure of it. However, right now the thought of him laying in that ICU instead of being at home with his loving family really breaks my heart. I wish there was something I could do for him… but I think the best thing I have to offer is prayer.

So I’m writing this to ask everyone to please keep him in your prayers too. He needs to get better, he just has to…

Keep fighting little Champion, You are so loved.


Thank you for praying for my special little friend.

…God’s timing is always the right timing and His answer is the always the right answer…

In God’s love,

Jessica

PS- Today is Juan Pi's amazing father, Roger's, birthday! Happy Birthday Roger and thank you for being such a great example of unconditional fatherly love to your son, even under the most difficult circumstances.

**To post a comment click "comments" below**

12 comments:

Anonymous said...

Psalm 145:18-19

18 The LORD is near to all who call on him,
to all who call on him in truth.
19 He fulfills the desires of those who fear him;
he hears their cry and saves them.

Anonymous said...

God has brought many new people in your life that you probably would not have met had you not had lyme and RSD.

What must that tapestry look like from His heavenly prospective? Every thread precisely and lovingly placed.

We will pray for Juan and His family. We have seen God perform many miracles down in Mexico and we will pray for one for Juan.

With love and prayers,
The Turners

Anonymous said...

Give me your eyes

Look down from a broken sky
Traced out by the city lights
My world from a mile high
Best seat in the house tonight
Touch down on the cold black top
Hold on for the sudden stop
Breathe in the familiar shock
Of confusion and chaos
All those people going somewhere
Why have I never cared
Give me your eyes for just one second
Give me your eyes so I can see
Everything that I keep missing
Give me your love for humanity
Give me your arms for the broken-hearted
The ones that are far beyond my reach
Give me your heart for the ones forgotten
Give me your eyes so I can see
Step out on a busy street
See a girl and our eyes meet
Does her best to smile at me
To hide what’s underneath
There’s a man just to her right
Black suit and a bright red tie
Too ashamed to tell his wife
He’s out of work, he’s buying time
All those people going somewhere
Why have I never cared
Give me your eyes for just one second
Give me your eyes so I can see
Everything that I keep missing
Give me your love for humanity
Give me your arms for the broken-hearted
The ones that are far beyond my reach
Give me your heart for the ones forgotten
Give me your eyes so I can see
I’ve been here a million times
A couple of million eyes
Just move and pass me by
I swear I never thought that I was wrong
Well, I want a second glance
So give me a second chance
To see the way You’ve seen the people all along
Give me your eyes for just one second
Give me your eyes so I can see
Everything that I keep missing
Give me your love for humanity
Give me your arms for the broken-hearted
The ones that are far beyond my reach
Give me your heart for the ones forgotten
Give me your eyes so I can see
Give me your eyes for just one second
Give me your eyes so I can see
Everything that I keep missing
Give me your love for humanity
Give me your arms for the broken-hearted
The ones that are far beyond my reach
Give me your heart for the ones forgotten
Give me your eyes so I can see

Fern said...

Thanks for the story. I heard it from your mom but it was good to hear it from you and how it impacted you. I, too, try to look outside myself. It is hard to explain to the able bodied, but we see God in so many more things! Looking out instead of in, gives us strength, courage and purpose. God is a fine example to follow! I am praying

Anonymous said...

Hi Jessica,
Thank you for sharing the story about Juan Pablo. He is an amazing gift from God to this world. Thanks also to you and your Mom for giving us the chance to meet his wonderful Mommy, Marus, yesterday. Their family is in our prayers and we hope to be able to spend time with them anytime they need to travel to AI duPont hospital in Delaware.
Love,
Kathy, Mark, Kerri and Erin

Anonymous said...

Dear Jessica,

Thank you for sharing Cham Pi's story with us. He is one beautiful a little boy -- how wonderful to have that precious face in our thoughts as we remember him in our prayers.

Thank you also for continuing to share your journey with us. I so look forward to "hearing" from you & often find myself reading & re-reading your blogs. You are an inspiration . . . And quite an amazing one at that!

So look forward to hearing from you soon . . .

With our love & warmest wishes to you & your Mom
The Klatts

Rosemary and John said...

Dear Jessica,

The word "bittersweet" comes to my mind as I read your beautiful, yet heart wrenching story.

You truly are "Kindred Spirits" with Juan Pablo. God gave him to you as well as he gave you to him. I was honored to be able to meet Juan Pablo and his family when John and I were there last year. They are an amazing family. I remember thinking how unusual it was that I was in touch with not 1 but 2 amazing families in the same hospital (of course, I mean you and your Mom). God brings people into our lives. Sometimes, we do not grasp the moment to meet with strangers and we miss what beauty they would have offered to us. We have to be open, to let others into our lives, and you are such an example of someone who is open.

Thank you for reminding us once again, that we are so fortunate to have what we do have when there are so many people around us who struggle everyday for the most basic of needs, like breathing.

We will remember Juan Pablo and his family is our prayers as we ask God for His mercy upon J.P. and his family.

Love you!

Rosemary and John
xoox

Anonymous said...

Sweet Jessica, you are so amazing and loving to all you meet. Juan Pablo and his family are given strength and hope by your example of faith. We all so dearly love you and your Mommacita Sarah Gina!
hugs from Nancy & Jose'

Kale said...

Jessica,

My son also has MD like JP. We are friends with Marus on Facebook and had the pleasure of meeting her and JP in Delaware back in May. Their family is an incredible source of inspiration for all of the families in our MD group. Thanks for posting such kind words about them.

Kale

kimber keeps up said...

Jessica: i've been sitting here for a whole night reading your story after finding your original news video on youtube. I've never been so amazed at a persons strength. For you to be caring about another persons suffering really makes you an amazing human being. You can make it through anything. Keep strong & keep praying.

Anonymous said...

Jessica, today I was at Dallas Airport and they called out that there was a Sunday service for anyone wishing to attend between flights. There was a reason I had a 3 hr layover....I was meant to hear how it is in God's time and God's plan that we are all instruments of his love. You are that for sure and so is Juan. thanks for reminding us that things happen and for a PURPOSE! To Glorify God with our lives in special ways. Thank you Jessica!
Love Nancy

Angela Jackson said...

Dear Jessica, The word "bittersweet" comes to my mind as I read your beautiful, yet heart wrenching story. You truly are "Kindred Spirits" with Juan Pablo. God gave him to you as well as he gave you to him. I was honored to be able to meet Juan Pablo and his family when John and I were there last year. They are an amazing family. I remember thinking how unusual it was that I was in touch with not 1 but 2 amazing families in the same hospital (of course, I mean you and your Mom). God brings people into our lives. Sometimes, we do not grasp the moment to meet with strangers and we miss what beauty they would have offered to us. We have to be open, to let others into our lives, and you are such an example of someone who is open. Thank you for reminding us once again, that we are so fortunate to have what we do have when there are so many people around us who struggle everyday for the most basic of needs, like breathing. We will remember Juan Pablo and his family is our prayers as we ask God for His mercy upon J.P. and his family. Love you! Rosemary and John xoox


Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)


As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!


Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.


Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.


Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!