Winter 2015

Heidi has been doing well. She has been getting her RSV vaccinations; today is the first day of March and has not had a significant illness since November. At the beginning of January we were able to venture to Ohio to visit Rick’s grandparents and other relatives. That was our first sight of snow this winter. The winter has been unusually cold and gray for central North Carolina, perhaps seeming even grayer than it actually is as our family adjusts to the world with my brother Chris no longer in it.

My older children’s paternal grandparents also met Heidi in January. My older children’s stepmother helped arrange a dinner at Grandma and Grandpa Jung’s where they met Heidi and Cassie for the first time ever; it was good to see them again. We also made up our missed family Christmas dinner with my older children on Valentine’s weekend.

The snow and ice has kept Cassie home from school for two weeks and she could miss still more school this week. We have been largely home bound, enjoying our time indoors, cooking and watching TV in front of the fire, though it’s getting a bit old. It seems I’m good for one week of snow and ice, but not so good for much longer than that! Also, we haven’t been able to get Heidi’s stroller out often lately because of ice and she is really ready to get out! We did go to the state museum of natural history last weekend to see a dinosaur exhibit; Heidi and Cassie both enjoyed that.

Here follows some photos from the past couple of months:



Holidays 2014

After a long hospitalization and another surgery, my brother Christopher Douglas Wilson passed away on January 3rd,2015. He was only 43, leaving behind his wife, two teen-aged stepdaughters, and a twelve-year-old son. Though he suffered in the last months of his life, the final weeks after the last surgery were definitely the worst for him. We were relieved when he was finally taken to the warmer, comfortable environment of a very nice hospice in Valdese. Chris was very involved in his community and church. At his funeral, the sanctuary overflowed such that the service was also televised into an adjoining community room where all could see it. We will all miss him forever.

Due to my brother’s condition in December, we didn’t celebrate Christmas as we usually do, with a family dinner on Christmas Day. I was visiting my brother with my older children at the hospital in Winston-Salem on Christmas Day and lunch at the cafeteria there was our Christmas dinner. Other than the tree Cassie decorated, the stockings I hung, and the few gifts I bought, Christmas seems to have skipped us this year.

The holiday passed without happening for us. Given the circumstances, this would be fine except that with babies like Heidi one feels an obligation to make Christmas twice as remarkable as it is even for a healthy baby. I hope that amid the stress of this year’s December, we did manage to give Heidi (and Cassie, Garyn, Cohen, and Adrie) a decent Christmas, even if the season wasn’t as we would have wished it. Here are some pictures taken from December:




November 2014

Heidi got sick at the beginning of the month and her congestion went to pneumonia. She was vomiting and could not keep the antibiotic down, so she had to be hospitalized for it to be given intravenously. She recovered, but then got sick again just before Thanksgiving. We weren’t able to go to Ohio for Thanksgiving to visit Rick’s grandparents as we had planned.

We are learning to seize moments of good health and act spontaneously, rather than rely on well-laid plans. We have to take Heidi to Florida in December for her next dose of the clinical trial drug and we don’t plan to do any other travelling over the holidays. We hope, though, that over the winter at a time when Heidi is well we will be able to just jump into the van and make a trip to Ohio. In the meantime, we are having a lot of fun family time at home with Heidi, Cassie, and my older children, Garyn, Cohen, and Adrien. Cassie and I have also found community in a church family of wonderful people.

We are also always thinking about my brother Chris. His brain tumors have aggressively returned. The treatments he has tried have not been successful and his options are diminishing. He is awaiting a decision from his surgeon as to whether yet another surgery is advisable. Chris has inspired his fellow church members as a certified lay speaker and is known throughout his community for reaching out to the indigent and marginalized. We hope he knows how much, like Heidi, he means to the people whose lives he touches.

(Tree outside the hospital window)

Heidi saying “No” to more pulmonary therapy!

All the girls!
Heidi loves for Mama to play her flute for her!
Heidi got tired of waiting for her hair to grow out!


Late October 2014

DSCN1205What a wonderful, crazy last couple of weeks it’s been!

In the middle of the month we took Heidi to Orlando for an evaluation for the clinical trial, but managed to fit in some fun:



For the last week of the month, we took Heidi and Cassie, who was on fall break, to Camp New Hope; it is a Christian charity camp in the mountains of North Carolina on the New River, especially maintained for children with terminal illnesses and their families. The weather was perfect, the foliage was gorgeous, and both girls had a great time. The volunteers at the camp had activities planned and had stocked the lodge with food and fire wood. We hope to go every year!



Papa and Gigi made it up for a couple of hours between activities with their new dog Bruno.



(A night out in Boone with our old friends Bo, Kirk, and Parker for dinner!)


We got home just in time to go out in the neighborhood for Halloween.


What a great time; and now we’re getting into the holiday season… whew!

Mid-October 2014

Well into my favorite month of the year! Last year Heidi’s diagnosis made the beautifully fiery colors of the turning trees look like torches of destruction; we’ve come a long way since then!Try to tell me this sweetie pie is suffering miserably, as we were so resoundingly promised!:


Heidi did have a bad cold over the weekend of the 3rd, but pulled through. I managed to slip away for couple of hours that Saturday the 4th to meet up with my big kids at the bluegrass festival in Raleigh (awesome music!)


Heidi recovered from her cold and was content throughout the week, but it was a few days before we got her oxygen sats up to the high 90s consistently.

Heidi got her new stander the day before she got sick; she may have to be a storm trooper for Halloween!


Here’s Heidi playing with the neighborhood girls:


Saturday, October 11th, was both the annual SMA Walk’n’Roll in Raleigh and Cassie’s birthday; it was quite a hectic day! I decorated the deck for Cassie’s party before the walk, we went to the walk, then immediately had to go into wild-preteen-girl party mode upon our return home! Here are some pics from those events:


Heidi just being our Cutie Piedi:


Finally mobile as a family!

It’s the last day of September and Heidi continues to make small gains in strength and motor skills. She briefly sat with minimal support last week while working out with her physical therapist. She has also been holding her head up better and moving her trunk more! Here she is working out with her therapist:DSCN0842

Now that we have our van, we are finally mobile as a family. In the last weekend of this month we visited family in Conover and Morganton. My brother Chris has suffered from meningiomas (benign brain tumors) for about four years now. He has them as a result of radiation he received as a child for leukemia. He has had several crainial surgeries in the past years and has lost one eye. He joined us for dinner at my mother’s, but he grew tired and had to leave shortly after dinner. He feels a connection with Heidi in sharing a terminal childhood diagnosis.DSCN0853DSCN0858DSCN0861DSCN0867
We also visited Papa and Gigi, my father and stepmother near Morganton. Heidi, however, was so tired she fell asleep before picture taking. Gigi gave Heidi a soft doll with “Heidi” embroidered on her skirt. The doll is lightweight and has several interesting textures for Heidi to feel: she loves it!DSCN0883DSCN0890
This last picture is of Heidi enjoying her bananas like any other baby, by smearing them all over her face, hair, and clothes!

That’s about all we have for this update. Family and friends, take care!

Slipping into September


September and the Labor Day holiday slipped up on us. Last year’s Labor Day holiday was another lifetime ago, the prior-SMA lifetime. We vacationed in Washington, D.C., visiting memorials and museums, oblivious to the cataclysm that would meet us in one month.

This Labor Day marked the first day of the most serious illness Heidi has had to this point. We finally got our handicapped modified van on Thursday, September 4th, and Heidi’s first trip in it was to the ER the next day for a chest x-ray. The x-ray showed what could have been a spot of pneumonia, an atelectasis, or part of her thymus gland. (We waited all day for this non-diagnosis, but at least didn’t have to be admitted.) After days of around-the-clock breathing treatments, percussive chest therapy, CoughAssisting, suctioning, and occasionally administering oxygen, Heidi pulled through. She is stronger than ever right now.

Thankfully, Heidi was recently approved for RN level nursing care. We learned during her illness exactly how important it is to have assistants that actually have medical training. (I know I don’t need to explain to SMA moms the frustrations of having unreliable or dangerously incompetent “assistants” sent to our homes.)

But Heidi has recovered, we have our van, and it will be easier for us to get out more! Last weekend (weekend of the 12th) Rick had a science conference in Wilmington. Even though it rained, we had a good time. There was an indoor swimming pool for Cassie and we ate a lot of good food. Even Heidi got to enjoy the crab dip we got in a downtown restaurant.

When we returned that Sunday night, we had a birthday dinner for my oldest daughter Garyn, who turned 22. All of my older kids were there, along with a couple of their friends. Their father Dave, stepmother Johanna, and Johanna’s mother Linda also came. We had a wonderful dinner of Johanna’s stuffed pasta shells, salad, garlic bread, red wine, and fruit tart.

The next day Heidi received the iPad given to her by the Gwendolyn Strong Foundation and a soft blanket made by SMA volunteers M.J. Park and Brenda Hanson. I posted pictures of Heidi above using these new gifts.

Happy coming autumn to everyone!

August: SMA Awareness Month


August is SMA awareness month. It has been amazing to see the things people have done to bring awareness of the disease!

Late in July I had written a letter responding to an article about rare genetic diseases in The New Yorker magazine. The letter briefly described SMA and our experience with the disease; it was nice that it was published in August since it is SMA Awareness Month.

By the end of the month the ALS Ice Bucket Challenge had caught fire and raised $50,000,000 for research and treatment of this disease (also called Lou Gehrig’s Disease). It is the adult form of SMA and the two diseases are closely related. Many in the SMA community took the Ice Bucket challenge, but also attempted to gain awareness of SMA by initiating a Smash SMA pie-in-the-face Challenge. Our family participated and challenged others. Rick lay in a truck bed filled with ice water for a few minutes, using a scuba tank to breathe, to make his points that the diseases leave their victims frozen and forced to rely on life support. A video of this can be found on Youtube by searching “Rick Hall ice bucket challenge.”

On the 23rd of the month Rick and I took Heidi to Mimi Yu’s SMA fundraiser in Raleigh. Mimi’s son has Type 2 SMA. It was a nice, successful event with SMA families and local newscasters present!

All in all, it’s been a successful month for SMA awareness, and at a time when treatments are finally in the foreseeable future!

Spring and Summer 2014

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Felt like we were just starting to get used to things when we were launched into the busiest summer ever! We attended the National SMA Conference in D.C. in June. There we met hundreds of other SMA families and gained valuable new information at the workshops offered there. Heidi’s clinical trial physician and pulmonologist were both there.

We met Senator Kay Hagan, a staff liaison of Senator Richard Burr, and our Congressman David Price in efforts to lobby for amends to FDA process and expansion of compassionate use of clinical trial drugs for quickly fatal diseases when the drugs are showing clear, clinically meaningful results. The SMA community grows impatient as children die when treatments are so close within reach.

After D.C. we drove up to the Shriner’s Hospital in Philadelphia. Rick wanted to see if they had advice regarding supports and motorized wheelchairs. The traffic between D.C. and Philly was awful! Hope never to have to go from D.C. to anywhere north of there on I-95 again!

We celebrated Heidi’s first birthday at the end of June! Then in July we made the trip to Florida for Heidi’s fourth clinical trial treatment, vacationing first in Venice before driving up to Orlando. We had hoped to have a van for the trip, but our Medicaid modification funding still has not come through. We had to rent a van for nearly a thousand dollars. Getting our modified van will mean a great change in our family’s quality of life if we are ever really able to get it. Heidi likes to get out and about, but it is difficult when we have no good means to secure her in a vehicle that she can tolerate for long.

The house in Venice had a huge open floor plan with a pool just off the back that seemed to have been constructed especially for Heidi’s special needs! In Orlando, while Rick took Heidi to get her dose, I watched Cassie tackle the Nickelodeon Resort’s water park with tireless enthusiasm.

The next morning before we left, Heidi had an evaluation for the trial. We met up with a couple of other SMA families at there at the hospital, one of which we had met online and in person before. The other family was newly diagnosed and had moved down all the way from Michigan to participate in the trial.

My older children just moved into an apartment in Raleigh to start the new school year. Cassie starts middle school in two days. With the summer over and school starting this week, maybe things will slow down for a bit?

Early 2014


We begin the year adapting to our new normal, going to doctor’s appointments, and learning about therapies, programs, and assistance that can benefit Heidi. In February we made another trip to Florida for a dose of the clinical trial drug; no question it is helping! We want the treatment to be available to all parents.