Background:

  • Both Jordyn and Jake have rhizomelic chondrodysplasia punctate (RCDP for short), an extremely rare genetic disorder that is a painful form of dwarfism, usually accompanied by severe intellectual disability and respiratory problems
  • Among the rarest of rare diseases, experts guess there are perhaps 100 cases worldwide.
  • There is no cure, and most children affected rarely survive into adolescence.
  • Jordyn Cirner was born on 11/11/05. She was diagnosed with RCDP type 2 before birth. She has under gone multiple surgeries including Tethered Cord Surgery, Tonsillectomy, Ear Tubes and Cataract Surgery on both eyes, and now has ocular lenses. She can only have limited nutrition orally, so she has a G-tube for medicines and is given night time feeds . In 2013 she had a gastric stimulator and a Nissen placed to help with gastric issues. Since then her heath and weight has improved dramatically. Jordyn also receives daily respiratory therapies as well as Physical Therapy, Occupational Therapy and Speech Therapies, as well as being home schooled.
  • Jake Cirner was born on 6/12/2002. He was diagnosed with RCDP Type 2 6 months later. He has under gone multiple surgeries since then, including cataract surgery on both eyes, ear tube surgery and osteotomy with a muscle release surgery on both arms to increase mobility. Jake has exceeded all expectations, currently receiving PT, OT and Speech Therapies, as well as being home schooled.

Now:

  • Jack can now walk with the assistance of a gate trainer.
  • Mom Mindy is active in the Rhizo Kids community, and they travel yearly to meet with other families affected, and she is also a member of the Family Advisory Council here at Rainbow
  • Jordyn and Jake both receive care here at Rainbow from a multitude of specialists and doctors, and mom Mindy says that ‘It is a blessing to have Rainbow in our backyard. Other families affected by this disease don’t have the access to exceptional medical care close by, and we are appreciative of the care they receive.

Rainbow Babies & Children’s Hospital is so important to patients and families of Northeast Ohio. Make a donation by calling the Holiday Lights at Victory Park phone bank at 216-983-5437 or text us at 51555. Make an online donation here.

Comments

Leave a Reply

Please log in using one of these methods to post your comment:

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Listen Live