Today we received the wonderful news that the documentary "Portraits of Hope" has won the Toronto Documentary Film contest. Not only did the team receive the grand prize, but also took two other prizes for their work. We will hopefully hear soon that it is playing in the Seattle Film Festival and possibly other film festivals around the globe. Jon Ward and his crew are such a wonderful group and I am touched to my core that they took this topic to the top. This seven-minute documentary features Victor and Charlotte, and the mission of Soulumination.




I am sharing a second child today from the NTSAD Conference. This little beauty is often referred to as "Little" Elise, with our Soul child Elise Ten Berge being called "Big" Elise since she is older and more grown up than this new Elise. Little Elise is also battling Tay Sachs. You can see that she has a charming younger sister and adoring parents. I was especially touched by the fact that this dad is the full-time caregiver, and he definitely had a magic touch with his daughters. Elise's mom is in our military and is another woman of amazing strength, again showing the essence of unconditional love. You all must remember that these angel children with Tay Sachs cannot communicate in the regular ways, so all of this parenting is done without the usual payback of kisses and hugs. It was an honor to work with this family, and you will see more about Elise on the gallery once we get everything mailed out and bios in place.

Since I mentioned "Big" Elise, it seemed the time to share a wonderful gift and huge surprise that I received from Sarah Mattingly shortly after arriving in Boston. She had been in a bookstore and picked up a book entitled Miami Ink, Marked for Greatness, and sure enough there is Elise's dad, John, featured with his tattoo that was shown on Miami Ink. It was such fun as Elise's family didn't know about his inclusion in this book either. I am posting a shot of how we displayed the book with Elise's family photo at the conference

I salute my friend Caty Strong for her efforts in putting together a special conference on quality end-of-life care. I had written that I was to speak and present the Soul photos, and it was a wonderful opportunity also for me to learn more about the position and efforts of the medical community around issues of life support. I met a professor at UW who is giving Soulumination a footnote in his upcoming book, a therapist who is related to a good friend of mine from Port Townsend and who recently lost her first grandchild in a still birth, many social workers and doctors who know patients that fit the profile for both children and adults of Soulumination, and a neighbor of our first angel baby, Joey. I know we will be working with some of the patients of the attendees very soon. Any work done from this conference will be held in a special place in my heart as Caty put this conference together to honor her father, a good friend of our family.

Please remember to use the "Good Search" site to do your Internet exploring and sign up giving Soulumination as your nonprofit of choice.

I close with humility and thankfulness that the work of Soul would capture the attention of film judges in Toronto. In love and peace, Lynette

Today I start the sharing of the photos from the NTSAD conference. I begin this special sharing today just coincidentally with a family whose mom told me it was her dream to have me record her lovely daughter, but since we live on opposite coasts she wasn't sure how this could happen. With the aid of Conner's Way Foundation it was so wonderful to meet this little beauty and to have time to pillow-fight with big brother Jake. The entire family was so kind and the grandparents were obviously a big part of Emma's support. Emma's dad and I, both being first-timers to the conference, had lots to chat about. We were amazed at the power and scope of the Tay Sachs organization. In time I hope to add lovely Emma to our gallery, so we will be hoping to have a bio from the parents in order for you to read her story. As with all these children, the story has twists that really wrench your heart, but hopefully the telling will lead to people getting tested and having the labs do accurate and complete work.

I also want to share with you a fundraiser that has touched my soul deeply. My assistant, who meets with all our brides, is very dear to me and to my family. Her wonderfully talented husband Greg is the filmmaker who has done work for Blake and Claire's family for Soulumination. I was privileged to shoot their wedding and the birth of their first-born daughter, Finnley. Well, Finnley's first birthday is coming up and we got a most amazing film of her first year and an invitation to come celebrate over cupcakes, but the part that causes me to have such tears of joy is the fact that they ask family and friends to donate to Soulumination in honor of this amazing baby girl. To say thank you for this gesture is too small, I am blessed and honored to have such support, it means the world to me.

I would like to ask all of you to take time to use a wonderful search engine called Good Search, it works like a charm and every time you use it after you have signed up with them, giving Soulumination as your choice of nonprofits, we will receive a penny for each and every search. My thanks to Patty Grazini and Sean Thayer for bringing it to my attention. If you would use it and spread the word, it could make a difference in the legacy of a child's or parent's life, and we would be most grateful. http://www.goodsearch.com/Default.aspx.

Today I will work with a new family that is coming to my studio with their four children. Their daughter has had a relapse of her cancer and they are in town waiting for her bone marrow transplant. I can tell it will be a fun and rewarding morning, as the mom was so positive and upbeat on the phone.

Jessica's mom came by to pick up the inserts she needed to complete the mailing of the newsletter. We are seeing the first donations arrive and that warms my heart and lets me realize that we can move forward with confidence.

I leave early tomorrow morning for the drive up to Bellingham, where I will be a speaker at a Mulitdisciplinary Conference of Health Professionals: Defining Quality at End of Life. I am honored to be a part of this conference and I salute my friend Caty for her hard work in putting together this event. I know it was her goal to honor the passing of her father with this outreach. Her family is very dear to my husband and I take this on with special feelings due to this connection.

I close as always, in love and peace, Lynette

The least I can say is that the Tay Sachs and Related Disease Family Conference was eye-opening, and as I process through all I saw and experienced and learned, most likely I will say it was life changing. But today I am so tired and emotionally drained that nothing is settled. I knew that meeting 17 new angel babies would be an experience not to be taken lightly, but one can't imagine until you have soaked it all into your soul.

I must first thank Sarah Mattingly for standing strong throughout the conference. She shot alongside me every step of the way. I am encouraging her to start her own foundation on the East Coast.

I again salute Conner's Way Foundation for their monetary support. This foundation has fully funded the work we accomplished at the conference, and that is no small thing. Conner's mom Desiree also scheduled all the shoots and made sure all the releases were signed, which made the days flow so beautifully. Sherri, Dylan's mom and founder of DJ's Foundation for Tay Sach's, was also amazing. Both Sherri and Desiree are talented shooters, and I so look forward to them sending me photos of myself with the incredible families of the conference. I foresee these two moms not only helping fund research and conferences but also recording these precious lives in meaningful and lasting ways. I picture both Conner and Dylan here today. Sarah and I hope that the legacy we are helping build for other families will always be thought of as a tribute to these little boys.

I think that the conference's biggest surprise, of which there were many, was the fact that Tay Sachs can have late onset and affect adults. I also didn't realize how many families come to the conference after the loss of their children, some as many as 22 years later. The related diseases were many and they seem to run similar courses and are all genetic in origin. All those affected have to be the offspring of two carriers of the particular gene for that disease. I also hadn't realized that there is juvenile onset of Tay Sachs. Just the numbers of people attending seemed more than I would have imagined when I knew in advance that there would be approximately 17 children with the diseases attending. Grandparents, nurses, sibs, family friends and aunts and uncles all were represented.

It was such a pleasure to get to see Elise again. She always brings her extended family and a nurse and her husband that are such a part of Elise's life. I hope they know how moved I am by their unconditional love, and that I feel a small part of Elise's entourage. Maybe I shouldn't presume to think I am included, but now that they have been with me for a third time, I bet they know that I am just going to be with them whenever possible. They are also special to me since they don't seem to mind my offbeat approach to life. When confused or a bit sorrowful by all that was around me, I would look to find Laurie, her parents or Linny and just get their amazing advice and support.

Over the next weeks I will be sharing all of the children of the conference, but we have to wait a bit for prints and scans to be available. To any attendee who might stumble upon this blog, I send my heartfelt thanks for your welcoming ways and I send love as you travel a path of love and hope.

I am sharing a couple of photos of my pals Miana and Emily from their recent visit to my studio. Now you can all see why it was such a special morning.
I close tired and weary to the bone, In love and peace, Lynette

Coming home from the cabin I stopped to see my Lulu one more time before she flies to Europe for a month with her best friends. I do not get to see her off as I will be in the Boston area at the National Tay Sachs Family Conference. This trip and the work that will be done by myself and Sarah Mattingly has received funding from Connor's Way Foundation. I met and worked with Connor and his family when I was in Washington, DC, to open the Collection showing at the Children's Hospital. Connor's mom, Desiree, is a tireless worker for the cause of Tay Sachs. I so look forward to this trip and to meeting the amazing families that will be attending with their lovely angel babies. Connor will be in my heart as his life has led me to this conference. He is pictured here today with his mom.

I share today photos of the lovely baby, Rhylee. I have written about her recently and soon she will be on our gallery. She is a SIDS Interrupted baby who passed away recently. Her mom so kindly agreed to let us share her story and her beautiful face with all of you.



Jessica and her mom, Susan, are busy stuffing envelopes for the newsletter. I am hoping that they can soon join Doug and me for dinner as a little thank you for all this hard work. Doug has not had the pleasure of meeting my favorite Buddha so I am hoping that they will be over to help us celebrate Lulu's 21st since she will be doing her own celebrating in Europe.

As I drove home today, my mind kept wandering from the loss of my friend Julie to today's senseless murders in Virginia. I am trying to find that place in my heart to stay loving and open through such loss, and today's tragedy adds a dimension of disbelief. I so badly want to reach out to make some small difference to the families that lost their loved ones, but it's so hard to imagine what could matter except to move forward in the work of Soulumination and put out to the universe that I care and that my heart fills with sorrow and love for the families. In love and peace, Lynette

Friday the 13th has always had special force for me and this early afternoon I received a call from my friend Brenda that our dear angel Julie Becker had passed today. I am wearing a necklace that Brenda had made me from the charm that each of us who attended Julie's living memorial were given. Of course today would be the very day that an article by Kristin Dizon would be on the front page of the Seattle P-I Life and Arts section featuring a radiant photo of our dear Julie and her youngest child which I am also posting here today. Julie will be missed by so many and celebrated for her amazing spark. We will do our best to honor her life with the expanded work of Soulumination.

I had the most magic visitors on Tuesday and I will be so excited to share photos once they are printed. Our dear Soul child Emily and her sister arrived bright and early attired in the most lovely ballet costumes. Mianna was wearing ballet slippers of course, but Emily in her usual offbeat and fetching way had chosen tap shoes to complete her attire. They proceeded to serenade and dance with the most fetching of attitudes and my heart melted when I thought back two years to the time that Emily's life expectancy was mere months. Emily is cancer-free and is doing so well that we had to wrap up the visit with wild rides on our office chairs through the studio and out into the courtyard. Thank you Deanne Wilson for helping provide the chairs that have served us in many more ways than the designers had intended.

We are so excited that a local business offered to print our second newsletter at an amazing price. You will soon be receiving yours if you are on our current mailing list. If you would like to receive this yearly missive and are not on the list please email us your address. Keep in mind that your newsletter will be folded, addressed and stamped by our dear Soul mom and daughter, Jessica and Susan. They have so generously offered to stuff and mail every one of these newsletters while they are living at Ronald McDonald House.

We have maintained enough capital to run this foundation without major fundraisers and I so hope you will consider backing us again this year as we forge into the new territory of adult photos. Jeremy Leffel's photos of one amazing family in the Auburn area are being delivered to them in the next few days, and Randell Walton just completed another job with a family we will be working with to assemble their gifts next week. I wait for two calls from Children's Hospital and we are currently helping to locate a photographer for a family in Texas. Kurt Smith and Christina Mallet are working with families to find a time when their assigned children are well enough to be photographed. Sandra Coan and Michael Good are both taking part in special shoots with one young couple who are expecting in the coming year. Your support is vital to our continuation and we hope to be able to fund a major portion of the year's work with donations received from this mailing. Please know that each donation, regardless of the amount, is welcome, and is so important to the families of Soulumination. We had increased postage this year, as the newsletter is coming to you in an envelope, but Lori Sawyer's husband is so kindly paying the difference in that postage. This type of generosity makes me so thankful.

I will be visiting my own Llewelyn tomorrow and hopefully she will join me for a little time at our cabin before she leaves for Europe. I am sharing a recent photo today of Lew with Memo. Please keep him in your heart as we await news; he may be recalled to duty in Iraq. I close as always, in love and peace, Lynette

It was a thrill to come home from another little retreat to our cabin to find that we have been named as a finalist in the documentary film contest in Toronto. There were 12 finalists out of 100 entries from around the world. This seven-minute film features two of our beloved soul children, Charlotte and Victor. We are all excited about the potential of having this out to a larger audience, so my sincere thanks to Jon and his crew for the excellent work and to Victor and Charlotte's families for letting us into their lives.

I hope you all saw our dear Marin on the front page of the Seattle Times on Saturday, March 31. Not only was she featured in the Times, but she recently was featured at the Make A Wish gala fundraiser and also won the Sammamish Courage award. This is the link to the story, which is well worth reading: seattletimes.nwsource.com/html/ localnews/2003644878_marin31e.html?syndication=rss - 41k - Cached - Similar pages.



We have been very busy in the last few days. Randell, Jodi and Jeremy have all completed shoots for us and we have assignments out for Kurt, Michael, Sandra, Christina and numerous more pending. It is so comforting to know that we have talent that can take on shoots and deliver such quality memories for the families of Soulumination. I feel so blessed to have such talent to share this work.

On Tuesday, Randell and I visited her

most recent family and I am honored to have had the privilege of meeting another person recently featured on the cover of the Seattle Times. His article is the following link: seattletimes.nwsource.com/html/ localnews/2003566760_skateboarder11e.html - 47k -. I am posting a photo that Randell captured that day. This wonderful young man is battling ALS and is so obviously one amazing husband and father. Randell was sent to this shoot by Providence Hospice of Seattle and they will use the the photos for telling about the work of this wonderful organization. We provided all the prints for the family as well as gift folders for both sons and the mom and sister-in-law. After seeing how much they loved the folders we will make one for each set of grandparents. You can see David's son sharing his folder with his dad.

I got to see my wonderful friend Jessica and her family last week. The last time I worked with them I met Jess' mom and sister but today I also got to meet her amazing grandparents and two lovely cousins. Jess is doing so very well after this second bone marrow transplant. She is learning to play guitar and just turned 13. You can see her today in all her wild and wonderful glory.


My sincere thanks again to Lori Sawyer as I believe we will have our second newsletter printed and ready to start the mailing process at tomorrow evening's board meeting. Lori has done an excellent job of telling about the work of the past year and giving details of the expansion of our mission.

I received a lovely email from the mother of a recent Soulumination baby girl. This little beauty melted us with her sweet looks and it is so hard to say that she died. It was great that I got to visit this tiny one a second time as she had been taken off all tubes and medical equipment when I returned and now the family has photos of her in her full glory. I hope this mom knows that her kind email today makes this all so tender and I am so thankful for her sweet words. We have sent her release forms and soon I can share her lovely face.


We mailed some very touching photos of a little five-year-old boy that our new photographer, Jodi Rosen, provided for this family. We are so happy to have Jodi with us. She has a lovely demeanor, and with her heart in such a place she is a true asset to our foundation.

Yesterday, I was called to the hospital to work with another family with a SIDS-interrupted baby. Again this one was a beautiful angel baby girl. The extended family and the mom's best friends formed a loving and desperately sad unit to support this young couple. My heart broke for them and I came home all weepy and wrung out. I put on my favorite pink sushi print pjs around nine last night but had to change almost immediately into hospital-appropriate attire as the family called to ask me to return to take some photos with two loving uncles who had been driving for hours to come see their niece and lend support. It was a powerful experience and there were very moving Native American rhythms throughout both times, as one of the grandpas was drumming or chanting these haunting rhythms. I am sorry it took so long to add to the blog, but all seems well now so, I close as always, In love and peace, Lynette