Run4Leah-CureNF

Marathon Success!

Run4Leah Team Photo May 26, 2013

It was a beautiful, sunny and perfectly cool day for a race.  Our 70 plus runners were ready and Leah led her Relay Team by running the first leg in 1:08, and immediately claimed she wants to run the 1/2 marathon (13 miles) next year!  She then joined her teamates (Sue Bennett, Lacy Bromly and Jake McPherson - below) at the finish so they could all run in together!

We are currently at $21,000 of or $26,000 goal!! Checks keep rolling in daily as well as online donations which will continue to accepted until October when a new research study will be identified for sponsorship.  A heartfelt "thank you" to our team of dedicated volunteers who manned the Run4Leah/Cure NF Waterstation, the Packet Pick Up table and Run4Leah Team Coordination!!  Our success would not be possible without your love, generosity and committment to Leah and CureNF.

 

Leah, John and John's teaching colleague Justin, await the handoff from the 2nd leg to the 3rd leg of the relay

 

Leah and one of her newest runners and "fundraiser extroidinaire", Kathy Kneeland

   

Leah and a pyramid of cousins that "hold her up" everyday!

Leah to Run in Buffalo Marathon

A 6 year volunteer veteran with the Buffalo Marathon and Run4Leah/Cure NF, this year Leah herself will join as a runner!

Following a successful rookie year with her school's cross-country team, Leah decided it was time to step out from behind the packet pickup table and Expo Booth and enter the road race as a Relay Team Member.

Race day is only 1 day away and we currently have 77 runners for the Run4Leah Team:

- We have 5 full marathoners, 28 half marathoners, & 11 relay teams

- We have reached 54% of our Goal to raise $26,000 for Neurofibromatosis

- We look forward to meeting runners at our Run4Leah/Cure NF Expo Booth

It's not too late to support Leah and her team mates!

To make a secure online donation, click the link under "make a donation" in the left hand column of this blog and you will be directed to Leah's FirstGiving donation page.

For mail in donations:  Make checks payable to "NF Inc., Northeast" Note"Manth/Run4Leah" in the memo line.   Please mail checks to David Manth, 2922 Walck Drive, North Tonawanda, NY 14120.  All donations are tax-deductible.

Donations can also be turned in at our Run4Leah/Cure NF Booth during the Expo (at the Convention Center) on Sat, May 25th 9am-4pm

Thank you in advance for your support!

The "Smile" Team

This wonderful team of caregivers are responsible for helping to bring back Leah's grin!  Front & center is Ashley Cross, Child Life Specialist.  She is surrounded by the phenomenal team of caring pediatric specialists at Massachusetts Eye & Ear Infirmary in Boston, who cared for Leah in December after her facial reanimation surgery by Dr. Hadlock.

Ashley writes to Leah & family,  "I wanted to share with you a fabulous picture we had taken of our staff sporting the awesome T-Shirts you kindly delivered to us. We cannot thank you enough for thinking of us and showing your appreciation for your care here on the Pediatric Floor.  Leah, you are truly amazing. You have the best personality and admirable strength. We loved caring for you here and took a lot away learning from you and your family. We think of you often and appreciate all the updates. You have the biggest fans here.  These T-Shirts make us smile as we think of you and your family."

Ashley & team- "Back at you!" - You have some devoted and appreciative fans here in Western New York too!  ...And many of us ordered and wear our "Smile" t-shirts proudly in appreciation for all you do for Leah and other NF2 & facial paralysis patients seeking to regain their smiles.

Keep up the awesome and very important work you do!

Leah & New York's NF Advocates Hit The Hill

On Sunday Feb 3rd, Leah and five family members boarded a plane for their annual trip to Washington, DC as part of the National Neurofibromatosis Coalition.  Our mission was to obtain continued Federal funding of the critical NF research currently being conducted through the Congressionally Directed Medical Research Program (CDMRP) and the National Institutes of Health (NIH).  Over the course of two days we had meetings with staffers from eleven congressional offices and we dropped in at the offices of the remaining nineteen NY representatives of Congress to leave behind a folder of informative materials regarding Neurofibromatosis and the much needed research to find effective drug treatments and ultimately a cure of this disorder. 

John & Leah

 

Catherine, Julie, Marybeth, Leah, John, Erin

 

Representative King, Leah, John & Julie

Leah & Marybeth during a quick afternoon break from all the meetings.

Follow up emails have been sent to all of the NY State congressionsal offices asking for support of the "Dear Colleague Letter" that will soon be circulating to garner continued federal funding of the CDMRP for NF.  We will be asking all of our blog readers, friends and family to write to their Respresentative and Senator to ask for their support by signing on to the Letter.   Last year we had 16 signatories from NY State and we are looking to increase that number this year.  More to come on how you can help at a later date!

Post- Op One Week Update

One week after her facial reanimation surgery (smile repair) Leah was back at school 1/2 days.  She continues to progress each day and was very happy to be home and preparing for Christmas celebrations.  The "shiner" around her right eye is nearly disappeared and the lid swelling has subsided tremendously.  Leah had a follow up visit with a specialist in Rochester, NY who works with Dr. Hadlock and who is closely monitoring the swelling in her right cheek and will remove her stitches when ready. 

Leah heads to the National Institutes of Health (NIH) in Maryland for her bi-annual participation in a natural history study which is tracking and gathering crucial information about NF2 in pediatric patients.  At the same time, Leah will see her team of doctors and specialists for ongoing testing and evaluation.

Your continued prayers,  well wishes and all the blog messages have been a real source of support and encouragement for the entire Manth family these past two weeks--THANK YOU!

Smile Surgery Update #8

Fri 11/30/12 - SPRUNG FROM THE HOSPITAL !!

Leah was discharged from the hospital on Friday afternoon.  Pictured above is Ashley, the Chid Life Specialist from the "Pedal Floor" sending her off.  Leah rested in the evening with Mom & Dad at the hotel and they will start to make their return trip home on Sat, and will take it easy.  If proves to be too much, they will continue their journey on Sunday. 

Many have asked if Leah's surgery was a success.  While Dr. Hadlock feels all appears to be progressing well, it will be 2-4 months before the swelling is fully reduced and the nerves have a chance to heal and begin "firing".  Although it appears Leah is smiling much better already,  there is a "pull up" that occurs immediately after the surgery, that gives symmetry to the face, and is even more pronounced in children as their faces are less resistant to the effects of gravity. In 2-4 months time a more natural/spontaneous smile should begin to emerge and Leah will then return to Boston to meet with the physical therapist who works specifically with facial paralysis patients to work on techniques to make it more natural and somewhat effortless smile.   As for her right eyelid, she also had a small weight placed during surgery to help complete closure of her eye.   So while currently Leah looks like she did a few rounds with Rocky Balboa, the eye bruising, and swelling will also improve.

As with anything "time heals all wounds."  Much love to all, The Manths

Dr. Hadlock & Leah

Smile Surgery Update #7

Fri 11/30/12  Day 4 Post-OP



Great  news came in late Thursday night-- Leah has started to emerge from the fog of surgery, anasthesia and narcotics.  She took two short walks, her facial drain and second IV line have been removed and her leg drain will hopefully come out today.  Her spirits are beginning to lift and she has been able to tolerate some bread and butter with pasta!  Keep the prayers and good thougths coming...they are working! 

Smile Surgery Update #6

Wed 11/28/12




Day 2 Post-Op:  Checking out some action on her iPad while resting her right eye.

Leah was up twice today and in a chair for 40 min and then took a big nap.  Still not feeling too good and her spirits were low today, as is typical for day 2. Her surgical team has confirmed that all continues to look good and bloodflow to the graft continues to be as it should.  One IV was removed and she has been switched from morphine to oral pain medication.  Looking forward to a good night's sleep.   Love to all from Leah, John & Linda.  Keep the comments coming as once Leah is up to it, she will read them!

 

 

Smile Surgery Update #5

Leah is thinking of her teammates at Canisius College and says "Go Griffs!" to Allyson and all the girls.  She'll be watching tonight on line, as she drifts in and out of sleep.  Still feeling pretty miserable.  All of her check ups throughout the day received a "thumbs up" from the surgical team.  First day Post-Op and all is looking good! 

Keep the prayers coming that the bloodflow to the graft site continues to look good on tomorrow's dopler and/or ultrasounds, as Day 2 is critical.

 

the prayers

Smile Surgery Update #4

Leah had a good night's sleep and her morning Ultrasound showed good bloodflow to the surgical site/grafted muscle.  Naturally, Leah is feeling a bit "beat up" today and will try to rest as much as possible.  Her doctors will monitor her very closely and work to manage her pain.  John and Linda will likely provide another update this evening.