A Life Changing Adaptation for the Julian Family

Dear Family and Friends,

What an amazing journey our family has been on these past five years, certainly not easy, but still filled with so much joy and gratitude.  Our Clare will be celebrating her 5th birthday tomorrow, September 11th.  Every birthday is a big one - we know others with her condition that have not lived to celebrate as many.  Bill and I sat recently and reflected on what we have been through, and realized all that Clare has taught us about love, about kindness and about grace.  

For those who may not know, Clare was born with a neuromuscular condition called Nemaline Myopathy.  NM is rare – it occurs 1 in every 50,000 people.  We had never heard of this condition before her diagnosis at four months old.   NM affects all of her muscles, giving her a “floppy” tone.  It especially affects the muscles in her face, neck, and trunk.  Because of the lack of muscle strength, Clare needs help to do basic human functions, including breathing, eating, talking, and walking.  She has a tracheostomy tube and is connected to a ventilator around the clock.  She lacks the strength and coordination to swallow so she receives all of her nutrients through a feeding tube.  Clare cannot walk so she relies on us, her caregivers, to get from place to place when her wheelchair isn’t conducive.  Our daughter is non-verbal and her mouth is always open so she uses sign language and a communication device to communicate.  She cannot manage her secretions so she constantly drools and we suction her mouth and trach often throughout the day and night. Even with all these challenges, Clare is so much more than her condition.  She is funny – dinner time is filled with laughter and it’s usually because of her antics.  She is smart – cognitively Clare tests higher than other children in her age group and learns very quickly. She is strong – what she lacks in muscle strength she makes up for in determination and courage.  She is amazing – Clare is a blessing to all that have the pleasure to meet her.  

Another way we are blessed is the many friends we have met.  We have gotten to know more people through Clare and those friendships have deepened immensely these past five years.  We have always been thankful to have the support of so many.  How lucky we are to have so many places to turn when we are down or stressed, need encouragement, prayers and positivity.  All of you have been blessings to us when we most needed that emotional lifeboat.

Today, we again face one of those practical problems.  While we hesitate to ask, so many people have told us that if there is ever anything they could do, that we should reach out.  We know that everyone has their own circumstances to deal with, but for those who have offered and might be able to help, we would be grateful for any way you might assist.

As Clare has grown and gotten older, one of the most significant challenges we face is transporting her.  While we searched for a fully adapted vehicle, the cost a few years ago was not something we could afford, nor was a $20,000 - $30,000 modification to another van.  Medicaid would help, but any van that met the mileage requirements, was still beyond our reach.


We purchased a regular family minivan a week before Clare was born to accommodate our growing family and have been using that as best we can.  Unfortunately, it is not equipped for wheelchair accessibility and so we must detach her from her oxygen, ventilator and suction machine, lift and carry her in a car seat, pull a 60 lb. portable ramp out to drive the wheelchair to the back of the van while removing pieces of it so it will fit and then strap it all down again.  We repeat that process in reverse when we arrive at our destination.

Whether it is riding to school and doctor appointments or even family outings, the process is daunting and time consuming.  A trip down the street to the store takes double the amount of time and energy but we do it because Clare deserves her independence and enjoys dictating her own way as she maneuvers her chair.  We also worry about Clare’s safety as we carry in and out of the house, especially in the harsh Cleveland winters.  Liam and Regan are amazingly patient through all of this, as it has become an everyday part of their world, but it is harrowing for them and for us at times on busier streets or parking lots depending on where we go. 

Two weeks ago, we received some amazing news and an answer to our prayers.  Through a Facebook tag on a private seller’s post, we met a gentleman who had a low-mileage, used vehicle that was fully adapted for an individual with specific needs.  The van was for his wife, and she had recently passed away.  While the payment was more than the current payment on our van, we knew we were unlikely to find anything this well maintained, with all the right options for Clare at anything close to this price.  He was delighted that our family could use it and so, through crunching numbers and taking a leap of faith, we purchased it.


To say that it has changed our lives would be an understatement.  What used to take us 20 minutes, now takes us no longer than it would to reasonably load any three kids in a car.  All of Clare’s equipment remains on Clare’s wheelchair and we simply enter the van using the side ramp and then secure her in the van.

While the van has proved to be such a blessing, unfortunately, the timing of it all came upon us quickly and meant that we would have an additional car payment.  In order to afford this new adapted van, we hope to pay off the remaining $4,440.47 balance on our current van (a $300 monthly payment).  

It is hard to ask for help, even though we need it time and time again.  Our challenges are different every day.  Sometimes we need help with watching the kids.  Other times, we’ve asked for your forgiveness for being late or unable to attend some function.  At all times, we have begged for your prayers.  The goodness and generosity that you have provided us is overwhelming and we thank you for that.

When one has a child with special needs, it is truly not possible to do it on your own.  We have never felt alone in Clare’s journey and it has been worth every sacrifice.  Everything we have done is to provide her a life of joy, health, happiness, accessibility, inclusivity and opportunity.  Clare is a delight to our family and all who have the pleasure to know her.  

Today, we are asking for your help in the form of financial assistance.  If you are able to give a gift of any amount to help us offset the expense of the additional car payment, we would be incredibly grateful.   If you are unable to at this time, we understand, and we know it does not diminish your love for our family.  If you know anyone else who might be in a position to contribute anything, perhaps you could share our story and help expand our reach.  

Purchasing this van and to ask for the help of others in allowing us to do so was a big decision for us.  It was another of our many leaps of faith in trusting that our friends and family would understand.  The importance of this vehicle in easing Clare’s life, and that of Liam and Regan and our family, was at the heart of our decision.  We truly made it out of love and with faith.

As always, we thank you for your prayers, your friendship, your kindness and your care of our family in every way that you have and no doubt continue to do.

From our whole hearts, thank you.  

With love,

Bill, Erin, Liam, Regan, and Clare