Lindsey Whitleigh Efird

* With God, All Things Are Possible. *

LINDSEY
(a.k.a. LuLu and Lindsey-Lu)
Born May 17, 1998
1104 Mountain Creek Road
Albemarle NC 28001
Little sister is Hannah Brooks Efird (my special sister)
Our proud Mommy is Karen Efird


Welcome to Lindseys MPS Journey website. I have created it to keep family and friends updated. Please visit often and keep in touch. We appreciate your love and support...especially your continued prayers!

Lindsey was born with MPS-IIIa (Sanfilippo Syndrome). MPS is genetic...she is missing the enzyme Heparan Sulfate. Our bodies have to recycle, otherwise they become incapacitated. Lindsey's body is not recycling unfortunately, due to the absence of this enzyme.

Lindsey was born and developed "normally". At age 2, Lindsey was not talking like a two year old should be. She was playing and developing socially, her fine & gross motor skills, etc. She could feed herself, walk/run outside with her sister Hannah, play games, etc.

Lindsey seemed just like a normal toddler. She put puzzles together, sang, was very smart actually. However at times, she seemed different...unique actually. So at age 3, we had Lindsey tested for genetic syndromes. We were thrilled to be told Lindsey was just developmentally delayed. We started her at the "famous" West Main PreK School here in Albemarle - we cherish our years there.

One year later, at age 4, Lindsey had already lost her small vocabulary and was still walking on her tip toes. She seemed perfectly fine, but different at the same time. She was fitted for braces, which helped her walk for awhile. We had her tested again that summer (at age 4). Unfortunately, the results were devastating. We then had to learn about life as an MPS family. We did, and were learning how to live FOR the future.

By age five, Lindsey had lost her physical abilities so we bought some equipment to use for her. We had equipment for strolling, beaching, bike riding and feeding Lindsey...all which made life much happier for all of us. Additionally, we attended our first MPS Family Conference, held in St. Louis. Wow, what an inspiration that week was for our family. I'm grateful we had the opportunnity to take Lindsey to one conference.

Lindsey was pretty "normal" as a toddler. She did the normal milestones, could climb in and out of bed, sing, feed herself, help do things, be playful, etc. By age 5-6, all of that, along with talking, eating, walking, standing, sitting up, was gone. Lindsey NEVER gave up though...she was still full of life every single day!

Lindsey didn't let MPS get the better of her. After an "adjustment period" for all of us, we truly began taking life precious each day and had fun with her. Hannah continued to be that wonderful "big" sister and made Lindsey laugh from the depths of her belly. We'll never forget her precious belly laugh & how Lindsey jiggled all over!

However, life took a dramatic turn on February 13, 2004. Lindsey woke up fine, but shortly afterwards she began what I thought were seizures. Within six hours of this, we were in the hospital where we remained for over 8 weeks - two long months! We were told by the Children's Hospital Team at UNC Hospitals that they didn't know what happened to Lindsey, but that it was NOT her MPS. Lindsey came home on April 12, 2004 with a tracheostomy (trach in neck)and gastrostomy (a g-tube in her tummy for feeding). Her neck primarily tilts to the right, and her back arches in a side 'C' shape.

Additionally, Lindsey cannot wear shoes any longer. Her feet are in a fixed downward position due to the severe posturing. Her legs (hips to ankles)are in an upward arch when she postures, and her legs are "warped" even when she is peaceful. Lindsey's left arm is in an inward twist with a clinched fist all the time now. Her right arm/hand is not as bad.

Life is truly hard now. Prior to Feb 13, Lindsey was able to attend the PreK School, play, smile, and interact. Lindsey was always full of life, with a bright smile and twinkling eyes, despite her challenges through the years. Lindsey is no longer able to do anything it seems. Once and a while we get to see her bright eyes and/or a smile. It's heavenly when that happens now, even though rare.

We are searching for answers still. Lindsey continues to have severe "posturing" spells, with increased blood pressure, heart rate, and sweating. She is pitiful when the posturing overtakes her body...she is stiff as lumber boards. Between the end of June and end of July, Lindsey was hospitalized various times for complications and infections.

On July 13, we traveled to Golisano Children's Hospital at the University of Rochester NY. We met with Dr. Jonathan Mink, a neurological distonia expert. Dr. Mink was very interested and concerned about the severity of her posturing. Lindsey had muscle and bone damage from posturing so much and her MRI scan revealed severe brain atrophy also. We'll just HOPE for the best from God above. As of August 13 (six LONG months of this nightmare) Lindsey is still not "well". I just wish the meds could be adjusted so we could see Lindsey's beautiful eyes and smile.

However, in October Lindsey began to deteriorate once again. We were admitted to the Children's Hospital in Chapel Hill on October 28. In the two weeks here, Lindsey had maxed out on her major medications (Ativan, Valium, Dantrolene, and Baclofen). The doctors said that controlling Lindsey with these medicines were dangerously sedating to the point of losing Lindsey. The only choice we had left to try was the Intrathecal Baclofen Pump. We weren't crazy about trying it, since we had been told earlier it would be a last resort. It became apparent to everyone that we had to do something and that was it.

On November 9, 2004 Lindsey had the Baclofen Pump inserted, after having two very successful trial injections. It's like a hockey puck under the skin. The Pump is programmed to deliver medication directly to the spinal cord. It's less sedating and more effective than through Lindey's G-tube. Our hopes are to discontinue some of Lindsey's other medications now, and she will once again be opening her eyes, tracking us and smiling - all with much less posturing!

Lindsey had a major set-back mid-November. Although the Pump was working (no posturing the first week), Lindsey never "recovered". We found out her PICC line was infected and so was her Pump catheter. Lindsey went into surgery to remove her Baclofen Pump because it had become infected at the incision site from her bowel movements. Lab tests proved that to be the culprit and Lindsey ended up with bacterial meningitis to her cerebral spinal fluid!!! We were told Lindsey was a very sick little girl AGAIN and was sent to PICU immediately. We are now back to square one (week before Thanksgiving) We only thought MPS was the worst nightmare of her/our life! Bless her heart, Lindsey has been hit with so many other obstacles on top of MPS.

Around December 10, the doctors told us Lindsey would need a second CSF Pressure Probe or a Shunt to drain the fluid from her brain (it was that bad). Either one would be risky and not doing anything would result in Lindsey becoming brain dead. Not something we wanted to hear or decide on. We chose the the second drain to hopefully get past the holidays and give Lindsey more time to heal on her own. However, on December 20, Lindsey started having seizures, unfortunately. The doctors don't know why...they say it should have come at onset of the meningitis, not now. It looks as if we'll be here through the holiday season.

Wednesday, Dec 29, 2004...two very loonngg months in Chapel Hill, we brought Lindsey home. We had another family meeting the weekend before and all of the specialists involved said that shunting Lindsey would not "help" her. It would only lower/drain her pressure fluid. All of Lindsey's issues would still be present, and probably more so now after all the infections these two months. Although we don't want to lose Lindsey, it was decided not to do the surgery. We also didn't want Lindsey to pass away in the hospital - which is essentially what will happen now (her passing away). It's an unbelievable end to her journey, and too many bumps for her along the way.

Since being home, Lindsey has not drastically gone down hill as we expected. We were told it could be days, weeks, probably not months though. She is running much more frequent fevers and posturing, but we try to keep her peaceful. Our Bayada Nurses are with us, so we'll just take life day by day. PLEASE CONTINUE TO PRAY FOR LINDSEY. As of September 2005, over 18 months since this additional nightmare began (MPS + Brain Stem Injury), Lindsey is still with us. Life isn't the best for Lindsey obviously - she definitely deserves to live life much better - but she is still here receiving our hugs and kisses. We still pray for God's divine intervention for renewed health, and pray for her peacefulness!

It's now the start of Summer 2006, and over two years ago Lindsey's little life sank into despair, worse than I think MPS could have been. Lindsey continues to live life on a "bed-ridden" scale. She is considered medically fragile, severely handicapped and terminally ill. No one (doctors) can seem to tell us anyway to resolve this "internal brain stem injury" that mysteriously happened to Lindsey. We do not enjoy watching Lindsey NOT be able to enjoy life the way she should. I know God will help me understand one day, some how. Thank you for visiting Lindsey's website and continuing to pray for her.

* WEBSITES TO VISIT/SUPPORT*
Also at the bottom of the page, please see OTHER important links of interest to us.

http://www.kidscards.org
(beautiful note cards of NICU babies to buy & use)
http://www.uncmarathon.org
(provides activities for families in Children's PlayAtrium)
http://www.foodlion.com
(please register your MVP card to support Christ the King, New London NC)

Thanks for your support by visiting these websites!

* LAPS FOR LINDSEY *
Each September we will have an event called "Laps for Lindsey, a 5k Run/Walk 'N Roll to Cure MPS". In September 2003 we had our first event. It was remarkable. We had about 300 participants, lots of volunteers, and raised over $17,000. We felt so blessed and loved again! We had volunteers on event day, products, & food donated, services donated, etc. All money raised was for research only, to help find a cure or treatment for MPS. Please consider volunteering at Laps for Lindsey.
*THE 2ND ANNUAL LAPS FOR LINDSEY, SEPTEMBER 2004, WILL *NOT* TAKE PLACE DUE TO VARIOUS CIRCUMSTANCES WITH LINDSEY'S HEALTH. We have since decided NOT to hold Laps for Lindsey any longer. Thank you for your support anyway.*

* ANNUAL FAMILY CONFERENCE *
Each year The National MPS Society holds a Family Conference for families affected with MPS to attend. There are medical update sessions, research sessions, individual "type" sessions (like all Sanfilippo Families meet), etc. In April 2003, we attended our first Family Conference in St Louis, Missouri, along with my Mom and Aunt. It was phenomenal meeting and talking to so many similar families. We made lasting friendships and learned a wealth of knowledge about life with MPS and how to deal with it. It was definitely the MPS support capital of the world! It is so beneficial to families.

This year's Family Conference will be held in Orlando, Florida in December. After being in Chapel Hill for two months (Oct-Dec), I needed a break. I needed emotional rejuvenation and support from MPS familes...we decided to go to the MPS Family Conference, along with Hannah. It was very nice and exactly what we needed. We are glad we went. Thankfully my family was with Lindsey 24 hours a day in the hospital while we were gone. Next year's conference will be held in the Pheonix/Scottsdale, Arizona area (November 2005). We will NOT be attending this conference. It's much to far to go and takes too long to get back home in an emergency. I'm very sad about missing this event...it's so hard to explain how this one gathering refuels you for the next year to come. The 2006 Family Conference will be held in Covington Kentucky (Cinncinnati OH). We wish all MPS Families the best until we meet again!



:-) WISH LIST / NEEDS LIST (-:

KAREN: Food Lion or Walmart Gift Cards (for groceries, supplies, gas/car care), Albemarle Compounding & Prescription Center Gift Certificate (2007 out of pocket expense for L & H $150/mo), lawn care, quiet Sunset Beach or Ocracoke get-away (in my dreams anyway-ha!), Albemarle Pediatrics Gift Certificate (Hannah), Mimi's Meal Solutions Gift Certificate, Bird Seed, Candles and Garden Flags (three things I love but won't spend money on!)

HANNAH: Aveeno Oatmeal Bath Packets (for Eczema), Christ the King Christian Academy sponsorship/financial assistance, Movie Theatre Tickets (Albemarle or ConcordMills), a world globe, PetCo gift card, Play-dates with cousins and friends would be fantastic!

LINDSEY: (2007 monthly average out of pocket expenses for Lindsey alone was $192/mo - receipts turned in for taxes): Fragrance Free Refill Baby Wipes, Trash Bags (13gal drawstring), Clorox Bleach, Tear Free Bath Wash/Shampoo, Shea Butter Lotion, Tide "Free" Clothes Detergent, Antibacterial Liquid Soap, White Distilled Vinegar, Dixie/Generic 3oz Paper Cups, Kleenex/Puffs, Clorox/Lysol Disenfecting Wipes. Bayada supplies some papertowels and hand sanitizer. DSS supplies diapers and chux. Lindsey does not receive any other funding/assistance, so I greatly appreciate the blessings you send!

*UPDATED 2008 - Wish List/Needs List Above - UPDATED 2008*


...Jaye Bear

"Faith is taking God at His word. It is believing that what God says is true even though your human eyes are telling you that you are facing an impossible situation.�
~Jan Silvious~

Journal

Monday, March 30, 2009 11:31 PM CDT

Please visit Lindsey's new website at:

http://www.caringbridge.org/visit/lindseylu

*Note the difference is the last two sections in the address.

Hospital Information:

Patient Room: Home 2/1/09

UNC Children's Hospital
101 Manning Drive
Chapel Hill NC 27514

Links:

E-mail Author: efirds4MPS@ctc.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.