Where There is No Cure, There is a Mother's Hope

Hiatham Breadiy and his mother, Azeza. 
The first thing you notice about Azeza Breadiy is her immense determination and focus.

Her firstborn son, Hiatham, has a severe form of epilepsy called Lafora Disease. This disease typically doesn’t manifest itself until adolescence. Children grow up normally, with no perceivable problems until they begin to suffer with seizures.

Hiatham is 15 and was recently diagnosed with Lafora. From manifestation, which is normally the first seizure, a Lafora victim will die typically within 10 years. There is no cure. Therapy is primarily palliative and aimed at reducing seizures. This is when Angela Hospice stepped in to support the Breadiy family.
Social Worker
Amanda Davis

Amanda Davis is Hiatham’s Angela Hospice social worker. She has teamed up with Azeza and the family to help find community resources for the many things they need to keep Hiatham comfortable.

The Breadiy family has three other children, Sophie, age 11; Gehad, 8; and Thayer, 10 months old. Hiatham’s father, Elayyan, has been battling Hodgkin's Lymphoma and went into remission late December 2016. Azeza is a lab tech.

The family faces many challenges. Azeza’s goal is to find researchers and clinical trials that aim to find gene therapies and medications to, if not cure, prolong the life of Lafora patients.

There is little awareness of Lafora Disease. The Rare Epilepsy Network promotes early diagnosis so that Lafora is considered by physicians, and the appropriate testing and treatment is initiated without delay.

“It’s tough to get the story out there,” says Azeza, “I’ve been shut down, but not out. Every little bit of awareness helps.”

"I've known Hiatham since 6th grade and he was one of my best friends...I wish we could talk like we used to. I'm literally in tears because I've known about this for so long and had hoped it would get better, but it hasn't...Hiatham is someone who I can't imagine being gone...so prayers all around from me." - Aiyana Siegert, friend of Hiatham

Volunteer Spotlight: Lin Fantino

Name:  Lin Fantino

How long have you been a volunteer? I became a volunteer in Fall 2017.

What areas do you work in/what sort of tasks do you do as a volunteer?
I work primarily in the Care Center, providing support for patients and staff. I completed a little additional training to allow me to support the Care Center staff with direct care to patients. This direct care adds a little more depth to the volunteer skill set and it is something I really enjoy.  

As volunteers, we are also invited to respond to the requests for volunteer assistance from other Angela departments. Marketing mailings, special events preparation and participation, and special assignment opportunities are some of the options for volunteers. I enjoy this variety.

What made you decide to become a volunteer?
Volunteering has always been something I was drawn to. My children are grown and doing well and I had just retired,  so I wanted to find a meaningful way to give back for all of God’s gifts in my life, now that I finally had the time. Angela was the answer!

Why Angela Hospice?
When evaluating the optimal choice for volunteering, I found that Angela’s mission statement was a great match for what I was seeking. The emphasis on the dignity of each person and the love and care that should be provided at end of life is very important to me. Angela provides an enriching environment, customized palliative care options, and a caring community of professional people to each person who comes to us for care.  

My time at Angela nurtures my spirit and faith, and allows me to share with wonderful people – both on the Angela teams and the patients themselves.  It has added richness to my life that I don’t think I could find elsewhere.

Lin Fantino volunteers in the Care Center, 
providing support to patients and the staff.
What is one of your favorite stories or memories from volunteering?
I always seem to take away something memorable from each of my volunteer assignments. One that stands out happened just a few weeks ago when Angela was asked to provide respite care in our Care Center for an infant, allowing the mother to get much needed rest. As part of the volunteer team for this request, I was able to spend time hugging, holding, feeding, and comforting this beautiful little baby. I will never forget the peace and gratitude I felt to be supporting this mother and baby to continue their journey together.     

Volunteer Spotlight: Jeanne Coleman

Name:  Jeanne Coleman

How long have you been a volunteer?
For Angela Hospice, almost 2 years, but close to 15 years with hospice — first in New York, then in Utah before moving to Michigan.

What areas do you work in/what sort of tasks do you do as a volunteer?
I currently have two areas of volunteering — I work in the Care Center where I help out each Saturday morning with breakfast and any other help needed by the patients, nurses, and aides. Secondly, I am active in the Bereavement Department doing  community outreach work, offering a grief support group to a retirement center.

What made you decide to become a volunteer?
I was teaching health for grades K-12 in New York when it became very apparent to me that my students were experiencing many losses and grief. I discovered we had no health curriculum that dealt with loss and bereavement, so I began to research sources and found hospice. Based on their work, I designed my own curriculum and was so in awe of what I learned about hospice, I began volunteering with the local hospice.

Why Angela Hospice?
When I moved to Michigan, it was very important to find a hospice as I believe firmly that this is my “soul work.” This is what I am meant to do while on this planet. One of the first people I met in Michigan is a nurse here and told me about Angela.

Jeanne near the memorial butterfly wall in the Care Center. 
Butterflies are a beautiful symbol of transformation and new
What is your favorite part about volunteering?
There is a profound sense of humility, reverence and almost “holy ground” I feel when I am with the dying and their families, or when I have the privilege of listening to those who are grieving the loss of a loved one. There simply is nothing like it.

What is one of your favorite stories or memories from volunteering?
In my early days with Hospice, our training consisted of shadowing one of the hospice nurses. I was assigned to an amazing nurse named George. Watching her with patients and families, I believe she taught me what is meant by “love made visible” — a lesson I carry with me to this day.

A Tigers Dream Come True

Our home care patient Barb had an unforgettable day at Comerica Park last month. She loves watching the Tigers, and she got the star treatment too, thanks to the Detroit Tigers Dreams Come True program. Barb was right on the field where she had her baseball autographed and got to meet some of the players — including her favorite, Miguel Cabrera.

Looking at these photos from her experience, Barb reminds us that it's never too late to make amazing new memories.

Barb's Tigers Photo Album

Niko Goodrum signs Barb's baseball

Barb with her nephew Mike and his wife Kim

Barb meeting Leonys Martín

Having a chat with Miguel Cabrera

It was an unforgettable day at the ballpark

Photos are the property of The Detroit Tigers, used with permission.

Volunteer Spotlight: Judy Green

Name:  Judy Green

How long have you been a volunteer? Since 1996

What areas do you work in/what sort of tasks do you do as a volunteer?
At first, I worked in the Care Center and did mailings, hospitality, or whatever I was asked to do. One of my long time tasks was providing meals for families in the My Nest is Best program.

After my husband's illness and death, I found that patient contact was too difficult. I don't do as much as I did since I've moved away from Livonia to Commerce Township. I still provide desserts for caregiver dinners and help with mailings and fundraising when I can.

What made you decide to become a volunteer?
I was looking for worthwhile volunteer work after retirement. Angela Hospice is well known and seemed like a good place to volunteer.

Why Angela Hospice?
It was close to home at the time and a Catholic-based organization that fulfilled a great need.

Judy bakes desserts for caregivers suppers
for patients and their families to enjoy.
What is your favorite part about volunteering?
There are so many areas in which to be useful, and as my abilities change with age and location, I am still able to help.

What is one of your favorite stories or memories from volunteering?
People share so many stories with us. I think the Tree of Life encourages people to tell us about their loves ones' journeys. The fact they are willing to share these memories with us is a rare privilege. We all like to remember those in our lives who have gone before us and I am always happy to listen.