Skip to content
asheeshbiyala's profile image - click for profile

Asheesh Biyala's Fundraiser:

I run for Aiyana

Asheesh's Photo
Asheesh's Photo
Asheesh's Photo
Asheesh's Photo
Asheesh's Photo
Asheesh's Photo
Asheesh's Photo
Asheesh's Photo
Asheesh's Photo
Asheesh Biyala

THE STORY:

This is my two year old daughter Aiyana and she has CDKL5 disorder. Aiyana started getting seizures when she was four weeks old. Since then she has been on special ketogenic diet and atleast three anti-epileptic medicines but still we have not been able to control her seizures. After being on nasogastric tube for several months because of her inability to eat sufficient calories on her own, she just went through a surgery to get a gastrostomy tube. Aiyana cannot walk, talk or feed herself.

Aiyana and approximately 600 other kids are battling with CDKL5, a very rare non-hereditary genetic disorder that comes with severe disabilities. Like Aiyana, most cannot walk, talk or feed themselves, and many are confined to wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties. Scientists and doctors do not know what causes CDKL5 mutations or the full spectrum of CDKL5 disorders at this time. With continued research and awareness of CDKL5, International Foundation for CDKL5 Research (IFCR) hopes to build a more comprehensive understanding of the spectrum of this disorder, and begin the search for a desperately needed cure. Due to rarity of the disorder, the foundation has not been able to get significant attention from the government or pharmaceutical companies. The foundation is completely funded and managed by the families of CDKL5 kids.

This year, after Aiyana turned two in July, I made a pledge. A pledge to complete five runs before her next birthday with just one goal in my heart and mind- raise awareness for CDKL5 and hopefully raise funds to support the foundation along the way. This may sound insignificant  but I hadn't been a runner and the 24th Annual 5k Labor Day Run 2014 hosted by City of Leawood, KS was my first ever run. With the strength and inspiration of my daughter and your support, I know I can accomplish this goal.

Your contribution today will help provide a better tomorrow for my Aiyana and all the kids suffering from CDKL5 disorder. Do something amazing and help us help these kids!!  Donations are going directly to IFCR and are tax-deductible. Thank you!!!!!!!!!!

Hope, Love, Cure.

Aiyana’s Dad

Completed:

24th Annual Labor Day 5K Run & Walk @ Leawood Park, Leawood, KS -9/1/2014

Asha-Jyothi 6th Annual 5K-9/20/2014

Jared Coones Memorial 5K run/walk - 10/4/2014

Waddell & Reed KC Marathon (5K)- 10/18/2014

Seize the Day 5K (Epilepsy Foundation of MO/KS)- 11/16/2014

Trolley Run 4 mile (CCVI)- 4/6/2015

 

 

DONATE

To This Fundraiser

$2,745

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Anonymous

    $501

  • Anonymous

    $50

  • Anya

    $100

  • Jana Cromer

    $100

  • Team Avery

    $50

  • Pallavi, Bhavesh and Ria

    $101

  • Inna & Anatoly

    $100

  • Anonymous

    $100

  • Rakesh, Shalu and Aanya Sachdeva

    $100

  • Ami Sanjanwala

    $200

  • Priyanka Barad

    $50

  • Milind, Akshata & Rithika

    $101

  • Anshika & Amrish

    $251

  • Piyush & Shilpa

    $200

  • Joyce West

    $150

  • Vijay Barad

    $101

  • Shipra, Anand, Sanvi & Shyla

    $50

  • Darshita Patel

    $30

  • Anonymous

    $50

  • Teresa Moore

    $115

  • Tanya Pasha

    $20

  • Deepali Mahabaleshwarkar

    $100

  • Anonymous

     

  • Anonymous

    $100

  •  
  •  
  •  
 

55% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $2,745 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Asheesh Biyala

Amount Raised

$2,644

 

53% Raised of $5,000 Goal

Fundraiser Title

Vijay Barad

Amount Raised

$101

Fundraiser Title

Akshata Nayak

Amount Raised

$0

Donor Comments

Anonymous

ANONYMOUS

DONATION: $100

3 years ago

Anonymous

ANONYMOUS

3 years ago

Deepali Mahabaleshwarkar

Deepali Mahabaleshwarkar

DONATION: $100

3 years ago

Tanya Pasha

Tanya Pasha

DONATION: $20

For Aiyana. My prayers are with you. 3 years ago

Teresa Moore

Teresa Moore

DONATION: $115

3 years ago

Anonymous

ANONYMOUS

DONATION: $50

My heart is moved greatly. Thoughts and prayers out to all the children and their families and my greatest pray is that a cure may soon be discovered. 4 years ago

Darshita Patel

Darshita Patel

DONATION: $30

4 years ago

Shipra, Anand, Sanvi & Shyla

Shipra, Anand, Sanvi & Shyla

DONATION: $50

4 years ago

Vijay Barad

Vijay Barad

DONATION: $101

4 years ago

Joyce West

Joyce West

DONATION: $150

Best wishes for many successful runs & increasing awareness to CDKL5! 4 years ago