Run4Leah-CureNF

A Great Day on the Links!

On Thursday, August 15, 2013 John and Linda's friends, Rick and Jenny Gottstine, organized a golf tournament on behalf of the East Aurora Police Department's Quaker Club. 

Rick, Leah & Jenny

As an East Aurora Police Officer, Rick  is a member of the Quaker Club and was in charge or organizing their golf tournament. He and Jenny immediately thought of Leah as the charitable recipient.  (Some of you may recall Rick and Jenny hosted a birthday party for their daughter Libby a few years ago where instead of gifts, they had guests bring what they would have used to purchase a gift, and "pay it forward" by donating the money to Leah's medical fund and NF2 research.) 

Keeping the same altruistic idea in mind, the weather cooperated and friends and strangers alike joined together at the Chestnut Hill Country Club for a fun day of golfing, basket raffles, a delicious steak dinner and an overall enjoyable day.  In the end $2500 was raised!  Half of the money was donated to Leah's Medical Fund to help with upcoming expenses involved with her medical care related to her Avastin treatments.  The other half went towards the NF2 research fund, that John, Linda and NFNetwork Northeast have donated to annually to support specific NF2 research. 

John & Leah

 

Sean Kelly, Lynn Kelly, Leah, Tammy Kelly & Kevin Kelly - The Winners!

We continue to be amazed at the outpouring of support friends from near and far provide us with on a frerquent basis.  We truly appreciate it and your generosity is paying off as we are starting to see the vital research into medications such as Avastin, becoming viable treatments to control the growth of these devastating tumors in NF2 patients.

With much appreciation and love,

The Manth Family

Leah at her first Avastin infusion on Monday 9/16/13. As of Tuesday morning, still feeling good.

First Infusion Success

Leah had a BIG day today-she received the first dose of Avastin. Avastin has shown some promise in NF2 patients with slowing the growth of the tumors that rob those with NF2 of their hearing. While technically a chemotherapy, Avastin does not have the typical side effects that you think of. It is not without side effects, but Leah handled the first dose with ease. Her mediport was accessed for the first time Sunday morning by the VNA nurse. Linda's life is coming full circle, with Leah receiving the same care that Linda used to provide children in their homes while working as a nurse for the Essential Care Program years ago. Leah spent the day at Children's Hospital with John today receiving the Avastin, that while it costs thousands of dollars/dose in each of those little bags (see attached photo) has a priceless outcome if it salvages her precious hearing. If all goes well we will continue with this same routine, receiving Avastin every other week as long as she tolerates it. Leah had a great weekend, running for the first time as a varsity cross country team member (while still in 8th grade) at The West Seneca Invitational. She not only finished first for her team, but ran a personal best of 24:31 for the 5K run! Thank you all for your continued support-our new family mantra is "STABLIZE TUMOR GROWTH!"

Love, The Manth Family

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!